10th Annual Angel Gala for
Spinal Muscular Atrophy
Saturday, November 14, 2015
For more information on Families of Spinal Muscular Atrophy Canada visit www.curesma.ca
Together we will find a cure.
The Angel Gala for SMA is a fundraiser to support research through Families of SMA Canada. In the past nine years, you have helped us to raise over $500,000 for Spinal Muscular Atrophy research.
Please join us for our 10th Annual Angel Gala for SMA onSaturday November 14, 2015
at beautiful Glen Abbey Golf Club, in Oakville, Ontario, CANADA.
Amber Mac will be joining us once again as our Master of Ceremonies.
The gala will include a delicious dinner, silent and live auction, DJ and dancing and fun photo booth.
ANGEL GALA FOR SMA EVENING ITINERARY
5:30 pm: Cocktail Reception/Silent Auction Opens
6:30 pm: Dinner
8:00 pm: Video Presentation, Guest Speakers and Acknowledgements
8:30 pm: Live Auction
8:45 pm: Door Prize and Heads and Tails Raffle
9:00 pm: Dance
9:45 pm: Auction Tables Close
10:00-11:00 pm: Silent and Live Auction Cash Out
10:45 pm: Coffee Bar Opens
1:00 am: Bar Closes
If you can’t attend the Angel Gala this year, please consider a donation for the live or silent auctions. To donate an item to our Silent/Live Auction or if you would like to make a tax-deductible Cash Donation, please contact Cheryl Vallender at (905) 847-1683 or firstname.lastname@example.org
We miss her soft laugh and gorgeous smile. She was one of a kind.
For more information, please contact Cheryl Vallender at email@example.com or (905) 847-1683
I wanted a happy ending for her. I want a happy ending for us all.
This year’s honouree is Asha Buliung.
We began to have concerns about Asha’s development when she was five months old. Although she had begun rolling and pushing herself to her forearms, she had four short episodes when all of her muscles shuddered. We mentioned this concern at her six month check-up and she was referred to a pediatric neurologist at our community hospital. When she was assessed at nine months, she was diagnosed with benign congenital hypotonia and we were told not to worry, she probably just “wouldn’t be chosen first for the baseball team”.
We remained concerned, however, as she did not seem to be gaining any strength. Following her 12-month visit, we started meeting with physiotherapists, but again, she was not making any gains. Asha then started daycare and developed two pneumonias in quick succession. One of Asha’s parents is a physician and we looked up causes of hypotonia. Asha’s symptoms seemed to fit with SMA. When she was 15 months, we requested the blood test. We received the positive result one month later. It was devastating. We were truly lost and felt alone, scared, and incredibly sad – the crying didn’t seem to let up for months. It still comes, often when we least expect it (including while writing our story).
Along with the diagnosis, we were given a few flyers and a folder introducing us to Families of SMA Canada. It took a day or two to write the email, but we felt like we had our first ally when we heard back. Over the next several months we began meeting other families in the Ontario chapter and continue to appreciate greatly their support and creativity.
Asha is now a very busy three year old. She regularly attends music, swimming, and art classes in the community. She also goes to preschool twice a week. She is the proud owner of her new “zoomer chair”; toes and walls beware!
After 3 months of performing tests and MRI’s, Arran’s paediatrician referred us to a neurologist in Thornhill. After the first consult there was no doubt in his mind that there was something definitely wrong with Arran and he mentioned SMA. He sent us right down to Sick Kids that day to perform the blood tests and also sent a referral to Dr. Tarnopolsky at McMaster Children’s Hospital in Hamilton. Before even getting the results of the blood test, we were seen by Dr. Tarnopolsky who confirmed, without formal results, that Arran had SMA Type 2. We were shocked, devastated and confused. We had never heard of SMA before. Everything spiralled and our beautiful son had to face this cruel disease we knew nothing about. He was only 18 months old.
After the initial shock and grieving period eased, we decided that we could either let this diagnosis consume us, or we could be proactive and learn everything we could in order to give Arran the best possible life. It wasn’t long before we came across the Families of SMA Canada web page. From the very first contact with Susi and Theresa, a weight seemed to lift. We were not alone. The support and hope we got from other families gave us courage to battle on. Within the first year of Arran’s diagnosis we were sent to the annual SMA Conference in California and also to the SMA Family Camp in BC. We participated in our first Rebecca Run, and also took part in the formation of the Ontario Chapter for Families of SMA Canada. It has been a truly inspiring year for us. We have met some amazing families along the way and formed lasting connections. We look forward to the years ahead knowing there is always hope and support.
Arran will be three in February and we couldn’t be more proud of him. Despite his affliction, he is such a happy, content little boy who has an amazing sense of humour and loves to make friends.. We have new firsts to look forward to now and Arran’s beautiful personality has been such an inspiration to never give up.
It was not right away that we started looking on the Internet, but when we decided we wanted to, it didn’t take long before we stumbled upon Families of SMA Canada and the Rebecca Run , and we quickly signed up and decided to dive in head first and meet with and talk with real people dealing with SMA just like us. It’s through these people we’ve met and through Families of SMA that we’ve learned the most about SMA, the good and the bad. I kept hearing about how we’re now part of a club that nobody wants to be a part of, and no truer words were ever spoken, but I’m really glad they’re there.
Zoe will be 3 years old this December, and we are so proud of our little girl. She attends part time daycare and is making lots of friends. She is learning so much so fast and she really is a bright child. She makes us laugh every day with her amazing sense of humor, and she loves to laugh and sing and play, and just loves her life. She has been so inspiring to us and she truly still is our perfect baby girl.
In shock, unable to understand what this meant, and how we were going to help Stella we immediately hit the internet. Probably not a great idea but it did lead us to FSMA Canada and the Rebecca Run . In June, just a month after diagnosis, we were in Florida for the FSMA conference, meeting some of the most incredible families and children being effected by this terrible disease. Then on that beautiful day last July we outfitted friends and family in their green “Team Stella” t-shirts and did what will be the first of many Rebecca Run s.
Since then we have had the pleasure of meeting many of the families in the Southern Ontario region that are dealing with or who have dealt with this cruel affliction. Their kindness, generosity and guidance has been a source of inspiration and hope.
At the time of this years Run Stella will be just over two years old and she will have a 4 month old little brother. She is always smiling, quick to make friends and we could not be more proud of her.
Myles and Sarah Bartlett
For more info on Stella visit her blog >> www.sarahandmyles.com/stella
September 10, 2008 – December 28, 2008
When we were asked whether or not we wanted to have our daughter Marley as the honouree for 2011, I was overcome with mixed emotions. Of course we wanted our daughter to be remembered and honoured for the beautiful and special person she was, but we would much rather be celebrating her first pee on the potty, her first day of Kindergarten or her 16th birthday. We would rather have her here with our family, fighting with her big sister than having to figure out how to talk about her short, unfinished life with us and how Spinal Muscular Atrophy has devastated our family. We would much rather be bugging my co-workers, family and friends to buy muffin mix or Girl Guide Cookies than having to ask strangers to donate money so that scientists can continue to work on finding a way to stop SMA from ravaging another child. But this is not the reality of life we now lead thanks to SMA. To begin I would like to share with you the story of our sweet child who did not deserve the fate that was dealt to her.
Marley was an unexpected surprise for our family. During my pregnancy I worried about the impact of having two small children but the minute that Marley was placed in my arms I knew that everything was going to be fine. Marley was such a sweet baby whose bright eyes captivated all who came into contact with her. She was content and liked to be held and snuggled. All in all, she was the ideal second baby. But in many ways she was not like her big sister. She did not have the same strength and movement that her sister had, she seemed weaker and floppy. After numerous visits to the paediatrician, and then a referral to the neurologist we were given the devastating news that Marley was afflicted with a life-limiting genetic disorder called Spinal Muscular Atrophy. There was no hope, no treatment and no cure. All the doctors could tell us was to take her home, love her and create some memories before she died. We were in disbelief. How could this precious little girl be taken from us? It just didn’t seem possible. From that moment on we were set on some sort of auto-pilot. Moving in and out of each day, holding on by a thread, not really having any understanding of the journey we were on. The one thing that we agreed on was to let Marley be in control. SMA had taken away so much from Marley we just wanted to give her some say in her short life. It was not going to be up to us to determine the length of her stay…she was in the proverbial driver’s seat as to how much she could tolerate and how she wanted to live out her life. We wanted to make sure that Marley enjoyed her life and that we lived as normally as possible. We tried to make every day, every minute count. Marley was an engaging baby who liked to smile and tell stories to anyone who would listen. Her big sister loved to hold her and help feed her and to chatter away at her. Marley loved watching her big sister and would smile when she would come into the room. She was a true “Daddy’s Girl”—he loved to hold and sing quietly into her ear, and Marley would turn her gaze to his voice whenever he came into the room. Even though SMA was wreaking havoc on her body, Marley was alert and attentive with everyone she came in contact with. She was a true shining star.
At 3 ½ months, on December 27, 2008, at a family Christmas, I put Marley down to rest in a quiet room that had a sculpture of my deceased grandmother in it. She did not wake up from that rest—she was tired. We truly believe that she wanted to leave us before her health deteriorated drastically. She wanted our memories to be about her not about a disease. Marley had chosen her time.
Sometimes I think that is some twisted way we were lucky. There was no escaping SMA. Marley’s fate was sealed but in many ways we did not have to live the SMA life. In the days before her death we were beginning to talk about more aggressive options to improve her quality of life but they were not seen as necessary at that point. We did not live in the world of G-tubes, cough-assist machines, modified car seats, wheel-chairs, spinal fusion surgeries, specialized transportation, physical therapy, or multiple trips to the emergency room. We only made one trip to the emergency room, in the back of a police cruiser where we got to hold our daughter in our arms as they turned off life support and she left us for good.
SMA impacts every family differently but the end is ultimately the same. Whether the journey takes thirty minutes or thirty years it is an exhausting roller-coaster that is filled with exhilarating joy and excruciating pain. Even though SMA is horrible, we would never have given up the opportunity to have welcomed Marley into our family, and to love her. Although she is not here, she is always with us in our hearts.
A cure needs to be found for SMA. While the voices are strong among those who have been personally impacted, we cannot do it alone. Please help us fund the research that will put an end to SMA.
September 16, 2008 – April 07, 2009
As they wheeled me from the delivery room to the recovery room everything was very surreal. I was on the most blissful and natural high that only the birth of a child could create. After a very healthy, happy and normal pregnancy I couldn’t believe that our baby girl was finally here. Emersyn arrived right on her due date. After a 22 hour labour, I clearly remember my husband Jason proudly pushing me and our brand new 8 ½ pound daughter down the hospital hallway. I recall a group of “moms to be” on a hospital tour stopping to smile and admire our new bundle of joy in her little pink and yellow hat. I remember how proud and full of love I felt. My midwife’s words at that moment still resonate in my mind, “Melanie your baby girl has chosen to arrive on a beautiful September afternoon”. As she said those words I looked outside as they wheeled me past the sliding glass doors of the maternity ward and the sunshine never looked so bright and beautiful as it did on that glorious day. I was a mom and Jason was a father and this was our adorable daughter with her big brown eyes and spiky black hair. We were a family of three and it felt so right! As our family filed in to meet her it was love at first sight, they were hooked on our first child a beautiful angel disguised as a baby girl and so her story began…
Once upon a time there was a beautiful angel that was looking for a home. She searched all over for a family who she could share her gifts with. These gifts were very special because if received properly would last forever. The angel decided that she would bless a young couple with their first baby, a girl and it was this little girl who would be the bearer of gifts that would change the world forever. And so, on a sunny September afternoon the little angel arrived to meet her proud parents. It was the happiest day of their lives when their baby girl was born. After careful thought and consideration they chose to name her Emersyn, which means Home Strength. They looked forward to teaching her all about life and sharing their pearls of wisdom with her. Little did they know that Emersyn would be the teacher who would give them gifts greater than they could have ever imagined.
The first three months of Emersyn’s life were blissful. Her mom and dad were so proud of their amazing daughter. Everywhere they went everyone commented on how bright her eyes were, how she watched and listened to everyone so deeply, and how she drew you into her with just one glance, and of course they could not help but admire how truly beautiful she was. The couple knew she was special and instinctively felt that she had an urgent sense of purpose, but it wasn’t until later that they would fully understand the depth of the gifts that she carried inside of her. These gifts were hard to see at first because they came in an unexpected package that initially caused great pain and anguish to the young family. It was on a cold day in December that time stood still as the happy couple was told that their perfect little angel may have a terminal genetic disease. The hopes and dreams they had for their little baby came crashing down around them as they made the painstaking drive home from the hospital to wait for six gruelling weeks for test results. Immediately the young couple were surrounded by support from their family and friends who rushed to their side to comfort them. Emersyn knew that bringing everyone together would help her parents to weather out this treacherous storm.
The couple was amazed that even during this terrible time little Emersyn continued to bring out the love and strength in everyone around her. After weeks of waiting for a diagnosis the news they were dreading finally came, their beautiful baby girl had a terminal genetic disease called Spinal Muscular Atrophy Type 1. Emersyn’s life was going to be short 1-2 years at best and they were told that it would be a difficult battle to say the least. As they cried and held each other tight Emersyn looked into their eyes as if to say trust me mom and dad I know what I am doing and I chose you both as my parents so you could help me share my gifts. Emersyn was a warrior. With bravery and gRun she faced tests, doctors, specialists and hospitals all the while smiling and reminding her parents that it did not matter where they were as long as they were together.
Everywhere she went her aunties, granny’s, grandpas, uncles, cousins, friends and family would sing, dance, laugh and play with her as she brought out only the best in everyone. On days when her mommy and daddy thought they could not go on for fear of losing her; little Emersyn taught them that the human spirit is resilient and magnificent. So, no time was wasted and everyone came together and made a pact to give Emersyn the best life possible and celebrate each and every day. The community rallied around to support the young family by dropping off food, sending cards and emails, and making donations and phone calls. Emersyn taught everyone that even in the face of fear you can still find the ability to love, laugh and bond even closer with one another. As the days and weeks went by Emersyn continued to stay strong, but her parents worried about having to make hard choices as her disease progressed. What would Emersyn want us to do? What would Emersyn say if she could tell us? Again, Emersyn looked knowingly at her parents as if to say trust me I know my plan and if you listen closely I will tell you. Mom and dad I love you, and I am going to take away all of the painstaking decisions for you surrounding my medical care by making sure the circumstances are taken out of your control. I want you to enjoy me as your baby girl and I want you to be parents first and foremost and leave the medical stuff up to me. SMA will not take me over because I am greater than that and so are the gifts I have given you because they will live on forever.
And so, on a sunny April afternoon with her magical courage, strength and gRun little Emersyn saw that her gifts were received and in the arms of her loving parents decided it was time to break the chains of SMA and return to her billowy soft angel wings. As her parents lay there in the warm glow of their daughter’s soul they realized that it was her last gift that was the most precious of them all. They discovered that their hearts were not broken or torn, but rather they were full and overflowing with tremendous love. They looked to one another while holding their little angel and vowed to share this magnificent gift with the world. Jason and I carried our daughter’s beautiful body out of the hospital on her sheepie while a trail of doctors, nurses, friends and family followed behind us. This may have seemed crazy to those on the outside but to us it seemed so natural. Our dear friend drove our car to the funeral home while Jason and I sat in the back together with Emersyn. As we arrived at the front door of the funeral home a wise looking women opened the door and motioned us in. The hardest part was leaving Emersyn there. We were always with her. The divine bond we had with our daughter was intense. Before leaving I stopped and looked at the funeral director and told her to take extra special care of Emersyn because she was an angel. The woman looked at me and said “I knew that from the moment I set eyes on her and I am honoured.”
Emersyn was born on Tuesday, September 16th 2008 and passed away from Spinal Muscular Atrophy on Tuesday, April 7th 2009. Tuesday’s child is a child of grace. Graceful Emersyn was indeed. To our first child Emersyn, our darling daughter, teacher and angel we love you, we miss you and we thank you for giving us the gift of you.
He was born on July 9, 1996, the third of my four children. Sylvain has 2 older brothers, Mathieu (age 20) and François-Daniel (age 14) and one sister, Marie-Josée (age 10).
The pregnancy was a normal one with the exception that it was a spontaneous delivery at 37 weeks. He was so perfect and the most beautiful baby boy.
From the day that he was born, Sylvain had tremors in his whole body. After discussing this with his pediatrician, I was advised that these tremors were caused by the pain medication administered during the delivery and not to worry, they would go away on their own. They never did.
Sylvain was doing everything a normal baby would do in the first 6 months of his life, but after that, I started to be concerned. The tremors had not gone away and although he never crawled, he was able to roll around on the floor and pull himself up on the side of the couch. He would ‘’couch walk’’, but suddenly his legs would give out and he would come crashing down on the floor for no apparent reason.
He started walking between 16-18 months of age but was constantly falling as if someone was tripping him on purpose. When he started to climb the stairs, he would only use one leg, dragging the other. It was very scary to see him trying so hard to climb stairs and all a sudden his little body would just give up and he would tumble down.
I took him to see the doctor, and was told, again, not to worry. That the tremors would go away in time and that his left leg was just weaker than the right and that was the direct cause of all his falls.
As Sylvain entered pre-school and his falls were getting worse, I went back to my family doctor who referred me to a specialist. Between the ages of three and four, I brought him to nine different specialists, eight of whom told me that Sylvain’s problems were all in my head and that their was nothing wrong with him with the exception of having week legs.
It was not until I met Dr. Muniini Mulera, a pediatrician out of Southlake Regional Health Centre, that Sylvain was on his way towards finding a diagnosis. After conducting a few basic tests, including watching Sylvain attempt to walk up a flight of stairs, Dr. Mulera told me that Sylvain did indeed have a problem and that further tests needs to be conducted to pin point the problem. Sylvain was therefore referred to a hospital located in Toronto for follow-up testing.
What followed was two years of numerous visits to specialists, testing, including MRI, CAT scan, and EMG. It was a blood DNA test which provided the answer. Sylvain was suffering from SMA Type III.
When we finally received the diagnosis, I though most of our problems were over, as treatment and support would surely follow, but that was not the case. I was told to love him and give him a good life. That doctor then proceeded to tell Sylvain that he would never be like all the other boys around him. He would never Run , ride a bike, play soccer or football, and that he would never get better. In fact, he would get worse. They gave me some literature, explained to Sylvain that there was no cure and sent us on our way.
I am proud to say that Sylvain was able to ride a BMX bike, he did play soccer and football with friends at school and he learned how to swim.
During the first year following the diagnosis, my family was nearly torn apart. Helping pull our family together was a small article about an upcoming event named the Esso Rebecca Run for SMA that was being held in Newmarket, at Fairy Lake Park. In addition, this Run was being held on Sylvain’s 9th birthday.
I took Sylvain to the Rebecca Run in 2004 to check things out. This was the first time we saw other people suffering from SMA. Sylvain decided right then and there that he wanted to make a difference so he started focusing on fundraising to find a cure for SMA. It took a long time to get a support team for Sylvain, but it all started with the Rebecca Run for SMA.
For the past three years, Sylvain has setup an SMA awareness booth at the Bradford arena on Canada Day with the assistance of his sister Marie-Josée and his brother François-Daniel, to raise awareness and funds for the annual Rebecca Run . The support we received has been tremendous; lots of people became aware about this unknown disease and they were very generous.
In fact, Sylvain raised so much money ($1,800- in 2006, $4,300 in 2007 and $2,000 in 2008) that his home town, Bradford West Gwillimbury, presented him with its first ever Youth Civic Award in 2007. He also received the Good Neighbour Award in 2007, for is dedication to helping finding a cure and raising money.
Because Sylvain’s birthday is on or around the same day as the Rebecca Run every year, he asked me if he could celebrate his birthday at the Rebecca Run . He invites all his friends and family members to participate every year and asks everyone to donate money to the Run instead of buying him birthday presents.
Sylvain has fought that battle all of his life, but his need for speed is to find a cure for the disease that is slowly robbing him of his ability to Run and walk like other kids. In 2007, Sylvain was able to walk the 3KM with the assistance of his AFOs. The walk was hard and painful as the disease had progressed. In 2008, Sylvain was determined to walk the 3KM with is AFOs, even though he now requires the use of a wheelchair on a daily basis. Unfortunately, he was unable to attend because his grandma passed away on Canada Day and the funeral was being held on the same day as the Run .
Before dying, his grandma asked him to continue his quest in finding a cure for SMA by raising awareness and to continue to participate to the Rebecca Run . When Sylvain met with Run director Louise Smith to remit the funds he had raised for the 2008 Run , he asked Mrs. Smith to apologize in his name and explain to everyone the reason why he was unable to participate. In his true caring nature, family came first.
July 16, 2006 – August 31, 2006
After a dream pregnancy, Max Yorke Vallender was born on July 16, 2006. Sam and I, big brother Colin, and our families and friends were so happy to finally have him here.
Everything seemed fine until later that night when the pediatrician arrived and said one of the nurses thought that Max was a bit floppy, especially on his right side. We were worried, but told it usually isn’t a big deal, and would resolve itself.
An appointment was scheduled at McMaster Children’s Hospital to meet with a neurologist the next day. We were very hopeful after meeting with the doctor and being told that there was nothing wrong with his brain, and that the floppiness would resolve on its own. This would all change once we met with neuromuscular doctor the following week.
After the neuromuscular doctor performed an initial examination of Max, he sent us for blood tests to determine if Max had a genetic disorder called Spinal Muscular Atrophy. We asked him what that meant, and what could we expect if the test was positive. He told us that if the test came back positive, the life expectancy of an infant with Type 1 SMA was 2 years. We were crushed.
We returned home after the blood test, anxious, devastated, worried, and deeply in love with our baby boy. How could our beautiful baby boy not be with us forever?
The following week, we noticed that Max’s breathing was quite laboured. We were admitted to McMaster Children’s Hospital and spent the next 3 days in the pediatric unit. Max’s breathing and oxygen levels were observed, but although his breathing was laboured, he was ok. Max ate very well, and always did best when he slept with his mommy. We were sent home with instructions on positioning and physiotherapy to ensure comfort for Max.
The following week and a half, we were home with our new baby boy. The time was some of the best memories we have of Max, but also filled with anxiety of the SMA testing. Colin was incredibly wonderful and gentle with Max, often asking our visitors “Do you want to pet my baby brother?” We all took naps together, with Max in the basinet next to the bed, and Colin climbing into our bed, it was a nice time with all of my boys.
At three weeks of age, Max smiled for the first time. We were later told that babies with SMA are so happy and smile often.
After a week and a half at home, Max was again admitted to McMaster in the NICU for breathing difficulties. We had been in the NICU for 3 days when we were given the diagnosis. Max had Type 1 SMA. Over the next few days we made plans for bringing Max home, and we made decisions that no one should ever have to make for their child.
We were also moved out of the bunk room, and moved to the Ronald McDonald House just a 4 minute walk from the hospital. We spent as much time as we could at the hospital, with grandparents visiting us at the hospital and picking Colin up for various activities and to bring him to visit mommy and Max.
One of the plans for bringing Max home included having a G-tube inserted to help with feeding once he came home. Max’s G-tube surgery was scheduled for Tuesday, August 29th. He did so well in the surgery. We anticipated that we might be able to take him home in a few weeks.
The next morning when we arrived at the hospital, we were informed that Max’s right lung had collapsed. They were trying to inflate it using various methods. I was not allowed to nurse him, and whenever I was present, he cried such a tiny little cry because he was hungry and knew I was there. We all thought it would be best to let Max rest for the day rather than irritate him and get him exhausted.
When we returned to the hospital in the evening, Max’s condition had not changed. Our parents came to the hospital to be with us. We all stayed at the hospital until 2:30am.
Sam and I returned the next morning at 7am. We were told that Max’s condition had not improved and that we would need to make a decision for the next step. We had already made the decision that we wouldn’t allow Max to suffer, and that turning off the machines would be best for him.
We were moved into a room in the NICU where Max could receive care, and our families could also be with us. Up until that time, Max was allowed only 2 visitors at a time, and one of the visitors had to be Sam or myself. Colin came to the hospital to see Max and say goodbye. Max’s grandparents, Grandma and Grandpa, and Nana and Grandad all spent the day with Max. Max’s god parents Richard and Katey also came to the hospital. When the minister came to say a prayer for Max, it was the only time that day that Max opened his eyes and looked directly at me.
Around 4:15 on August 31, Max peacefully left this world to join other loved ones in heaven. He was surrounded by his family and friends and knew very much how loved he was.
We are so grateful that we had Max for 6 short weeks, and that he touched so many people in his short life. We know that Max had a purpose in this world that will outlive his time here. SMA took our son, brother, grandson, nephew, friend from us, but we will always have his spirit, his love and his smile to remember.
January 6, 2006 – January 6, 2006
We waited 36 weeks and 4 days to say hello and all we got to say was goodbye. On January the 6th, 2006, the brief flash of life that was our baby girl, Sonja Natalia, was extinguished by a disease so insidious that none of the caregivers who had accompanied us on our journey suspected it was looming or even could recognize its mark. For thirty-five minutes she fought for life but never cried, never opened her eyes. The baby we had dreamed of, the life we had anticipated was, in an instant, gone. For several months we waited for the report that would tell us why.
From the first day we suspected our baby was coming to us we were reluctant to believe our wishes had, after over five years, finally been answered. All around us family and friends were warmed by her spirit and glowed as they spoke with anticipation of the child that was so deeply wanted. It seems everyone whose life Sonja touched changed as she influenced the world around her in subtle ways; people became kinder, more patient, and more generous, to each other and us. She reacted to the world around her, she responded to voices and foods and would dance and wiggle in the daytime to music her mother played for her and was considerate in sleeping through the night. Everything seemed to proceed normally and none suspected anything significant had changed when, at 26 weeks, Sonja performed an acrobatic shift in position and, thereafter, her movements gradually diminished; she was resting in a breach position. Although we were all blissfully unaware this point marked the beginning of Sonja’s fight.
The following 8 weeks were marked by rising blood pressure and a dangerous increase in amniotic fluid. Finally, with her mother’s kidneys failing, Sonja was delivered by emergency caesarean section, the procedure made more difficult when it was discovered that several of her joints were conjuncted and unable to bend. Her mother had accumulated six times the normal amount of amniotic fluid and the loss of muscle tone that took Sonja’s ability to swallow also prevented her lungs from developing, leaving urgent attempts at resuscitation futile.
Our beautiful baby daughter died because of SMA (Type 1, onset in utero). This disease took her away from us but it will never take away the love we have for her or the joyful dreams for our lives together. Sonja had an incredible spirit and desire to live, just like all the other people with SMA. Even though she lived for only a short time outside of her mother Sonja’s love and spirit has touched many. We knew that Sonja was meant to be and that she had purpose in this world; her purpose and voice have outlived her little body. Sonja’s existence has helped to spread the word about SMA and will continue to do so. Information collected about her birth and from her autopsy will help in the research of this horrible killer. Sonja, like all the SMA angels, is part of our fight to help keep others from dying. She will do this by inspiring others to do their best to raise money for research and medical trials, spread awareness about SMA and fight the fight.
At six years old, Hayden is an exceptionally bright and engaging boy who has already battled more obstacles than many of us has to deal with in a lifetime.
At only 8 months of age, Hayden was diagnosed with a devastating neuromuscular disease: Spinal Muscular Atrophy (SMA), Type I/II. Because of SMA, Hayden never rolled or crawled as a baby. With only 10% the muscle mass of an average child his age, Hayden is unable to walk and cannot sit unsupported. He cannot hold his head up or use his hands to play independently. But by means of a specialized power wheelchair, Hayden is able to sit supported and enjoy some mobility. Watch for his license plate, which reads “Rock ‘N Roll”.
Hayden’s swallowing is also affected, such that he receives most of his nutrition through a feeding tube (G-tube) that goes directly into his stomach. And most critically of all, because of SMA, Hayden’s breathing is affected and he must use a breathing machine when he sleeps and in times of illness and fatigue.
On a daily basis, Hayden seems unaffected emotionally by his condition. He is a wise soul and seems to simply accept himself for who he is. His parents’ hope is always that others may do the same of him. Take away the physical obstacles, the wheelchair, the braces and Hayden is a little boy who is passionate about life, his collections of dinosaurs, cars and trucks, and music, and loves his family beyond words.
Although Hayden’s body may be weak, his spirit and courage are undeniably strong.
Meet Hayden’s Family
Hayden is the eldest of two children. His younger sister, Lauren, who is almost three years of age, is unaffected by SMA. Lauren is a feisty, strong-willed girl, almost out of necessity. From day one, she had to hit the ground Run ning. Both children are beyond their years for what they have already experienced and seen at their tender ages.
Hayden’s parents, Ian and Tina, have devoted themselves to their children. They truly work as a team, particularly when it comes to managing Hayden’s very involved care. Ian and Tina always say that Hayden is their little professor, teaching them each day what is important in life. In six short years, they have learned so very much.
June 5, 2003 – October 21, 2003
Abigail Lynn Loebach was born on June 5,2003 . After seven years of trying she was the beautiful blessing of proud parents Dave and Jennifer. She seemed like much more than we had hoped for.
She hardly cried that much and she was a good eater and slept through the night right away. She seemed like the perfect baby. She never really squirmed or moved her legs very much. Everyone thought she was very content, as she always seemed extremely bright and alert. At about eight weeks of age Abby was clinically diagnosed with Spinal Muscular Atrophy Type 1. Abby put up a very hard struggle against this disease and overcame many obstacles. She could never really move that much but she was very inquisitive and took in a lot of the world around her. Abby always greeted visitors with big smiles that could light up any room even though not one word came out of her mouth she spoke volumes to many people through her big beautiful eyes. Abby loved to be in her “bouncy” chair, which is where she spent most of her time. She would sit in front of her Papa’s big screen TV and watch some of her favorite shows like Elmo or Bear and the Big Blue House or read and sing songs with her Mommy. One of her favorites was “If you’re happy and you know it”. On October 21,2003 Abby lost her battle against this untreatable and incurable disease and got her wings in the arms of her Mommy with her Daddy by her side. Abby is now our little angel dwelling amongst the other angels and saints along with her best friend Jamie and all of the other SMA angels.
During her short life Abby provided us and the many people she met with a lifetime of beautiful memories and inspiration. We will love her forever and cherish her always.
September 6, 2003 – February 1, 2004
It was a beautiful, hot, sunny day in September when our daughter Jamie was born. We had waited for this day for almost 4½ years. It was a dream pregnancy, labour and delivery.
We had our perfect, gorgeous little girl at last. She was just so pretty it was hard to take your eyes off of her. I had so many people comment on how alert she was, even from the very beginning she was always looking around, taking it all in. Jamie was also a very smiley and very chatty baby, she loved to have little “talks” with her father, whether they were on the change table, floor or on the couch. We realized at around 1 month that something seemed to be wrong, she was just too floppy, we thought she was lazy. Of course we refused to believe that something may be wrong with her, but at 2 months our family doctor noticed her decreased muscle tone and sent us to a pediatrician.
Jamie was tested for SMA and DNA results confirmed the diagnosis. We had a wait for the test results but we knew what the results were going to be before the doctor even told us.
The 4 months and 25 days that Jamie was with us were both the best and the worst time of our lives. We loved our little girl so much and had waited so long for her and we knew that she would be lucky to make it to 2 years. It was so hard to live with that fact. We had noticed her going downhill for a little while before she died, but it all came so fast. One morning, after sleeping through the night, she woke up and she had problems feeding. As I watched her, her colour deteriorated and we rushed her to the hospital. They took us down to the Hospital for Sick Children in Toronto . After ruling out bacteria and viruses for the causes of her collapsed lungs, it was evident that SMA had weakened her to the point where she couldn’t breathe on her own. We had to make the most heart-wrenching decision a parent could ever have to make. On Sunday February 1, 2004 Jamie peacefully slipped away in our arms surrounded by her grandparents.
We are so grateful to have had our little angel with us, even for such a short time. She was truly a blessing and had taught us so much about ourselves, about life and about death. We have her pictures all around our house and I can’t even count the number of times that I think of her every day, even so, she was just so precious and will live forever in our hearts until we can all be together again.
SMA may have stolen our daughter, but we still have pictures, videos and especially memories, and that can’t be taken from us!
Natalie Christina McDonald was born on September 22, 1999, the first child to Terry and Christina. She was so perfect and so beautiful. She did everything a normal baby would do in the first year of life except pull herself up to walk. If stood in front of the couch she would “couch walk” but soon her legs would give out and she would crash to the floor and crawl again, very determined to get the things she wanted. We started at 1 year of age with knee x-rays, then blood tests for the more normal stuff, a cat scan, then off to Hamilton to a neuromuscular clinic where at the age of 2 she was diagnosed with SMA Type 2. Natalie was all smiles and love when we sat in the doctor’s office and were given the diagnosis.
She didn’t understand what the future held or meant. Natalie was sitting on my lap and I started to cry and she kept looking around and the doctor handed her the Kleenex box and she started to wipe my tears. She showed us that no matter how bad things were we were so lucky to have her here
It’s been 2 and half years since Natalie was diagnosed. She is like every 4 year old except for the power wheel chair. Her favorite color is pink; she loves to go swimming and fishing and walks on our large piece of property and she loves anything crafty. She is currently attending Jr. kindergarten and loves school so much she wants to go all the time.
Everywhere we go Natalie’s smile lights up the room and makes people realize how precious life really is. They say that the brightest stars shine the shortest and we need help to make these SMA stars shine longer.
August 3, 2001 – October 29, 2002
Liam Tyler Zajdlik was born on August 3, 2001, the first child of Janet and Dave. He was a beautiful baby and seemingly healthy in every way. Over the next couple of months things were as normal as they could be with a first child. The only visits to the doctor were for regular immunizations, and there was no indication from anyone what might be coming. Everything changed early in January, 2002 when Liam was diagnosed with SMA. It soon became apparent that Liam had the most severe type of SMA, and was not likely to see his second birthday.
With help from family and friends, we tried our best to make Liam’s life as happy and comfortable as possible. In spite of his condition, Liam was a vibrant little boy with the most beautiful smile. He loved going for walks in his jogger, having books read to him and just lying in his pool, sucking his thumb. Most of the time, Liam didn’t seem to understand he was sick. Whenever he was at the hospital or at the doctor’s, he spent most of the time cheering other people with his infectious smile.
At last year’s Rebecca’s Run , Liam was pushed in his jogger by his mom. By the fall, however, the disease was proving to be too much for him. Sleeping was always a problem for Liam, with his difficulty breathing and the inability to shift his body position. (Imagine lying in bed unable to move your arms or legs.) Then he lost the ability to swallow his food, and needed an operation to receive a feeding tube. Finally, weakened by pneumonia, he died in the arms of his mommy and daddy on October, 29, 2002. He was only 15 months old. Liam did not die because of a lack of love or caring medical professionals. He died because there is no effective treatment or cure of SMA. Liam was not a statistic to those who loved and cared for him. He was an angelic little boy of beautiful character and is missed every waking moment by his mommy and daddy. We love you Liam and hope you are at peace.
Rebecca was diagnosed with SMA Type 2 on May 31, 2001. No one ever forgets the diagnosis date. She is now 15 years old. SMA has slowly robbed her of her strength and independence over the years. It has been a slow, gradual decline.
Rebecca is strong for someone with SMA Type 2. While she was never able to walk independently, she used to take the attendance to the office in Kindergarten. This entailed walking with a walker and leg braces and putting the attendance in a little basket hanging on the front of the walker. She would walk all of the way from her classroom, down the hall and back.Soon, she could only walk across the room, rest, and then walk back. Then, only a few steps. And eventually, not at all.
It is difficult to see your child decline. It goes against the laws of nature, where they should be growing bigger and stronger every year. As she weakened, she developed scoliosis which slowly twisted her spine.
Rebecca required spinal fusion surgery when she was 13 years old. The operation took 16 hours and she required 2 blood transfusions. It was almost a year before she was able to sit up in her wheelchair properly and regain lost function.
What has remained a constant through all of these years is how much those around us have helped. Supporting SMA every year at the Rebecca Run and the Angel Gala has raised $2.5 million dollars for research. And the best news? The latest Clinical Trial is yielding results. It is only one step away from FDA approval.
I have witnessed videos of SMA Type 1 children, who should never even be able to hold their own head up, standing. Research shows that the earlier the drugs are administered, the better they will work. More research has to be done to find a way to revive lost motor neurons. But so much progress has been made.
We used to use the saying in our fundraising that a cure or treatment would be found in 5 years. Well, 5 years came and went. And, then 10 years. But finally, FINALLY, the new drugs should be available to the SMA community very soon.
And, Rebecca? She is a very strong-willed, tenacious teenager. She is an unbelievable artist. She has lots of friends and loves to socialize. She is going into Grade 11 at high school. She can also be rebellious (as seen in her purple, silver and grey hair and in her preference for Doc Martens). Our hope now is that the new drugs come as soon as possible before she gets any weaker.
Together we WILL find a cure for SMA.
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