Zolgensma has been approved in Canada and every baby has been dosed in Alberta, except for Reign. He has been denied for every type of funding due to his bipap mask. There is no data on bipap being an issue with Zolgensma. This is unfair. Babies around the world are receiving zolgensma while on breathing support and doing great!!
If we fundraised the money we could get Reign dosed here, however the government won't pay for his dose like the others. How does that make sense?? He's ineligible for funding but not for the drug itself?? We have been fighting for a year and a half for this and its gotten ridiculous. Quit letting our son suffer.
There are multiple case studies that show Zolgensma is effective for those on bipap!!!
Hello, thank you for taking the time to consider dancing in the "Reign". Our precious first born son was born on March 5th 2019. We named him Reign with the belief, that he would reign in this life like a King. When he was four months old, we were told that would not be the case as he was diagnosed with type 1 SMA (spinal muscular atrophy).
Spinal muscular atrophy is a genetic disorder characterized by weakness and wasting (atrophy) in muscles used for movement. It is caused by a loss of specialized nerve cells called motor neurons that control muscle movement. SMA rapidly robs babies of their ability to move, talk, swallow and eventually breathe. Debilitating and often fatal, SMA claims the lives of 95% plus of its victims before the age of two. SMA affects 1 in 7500 individuals and is the leading genetic cause of death among infants.
Although there is currently no funding available for Zolgensma in Canada, we were blessed to find out that in March 2019 a drug called Spinraza, used to treat SMA was being made available to Albertans for the first time. The drug does not cure SMA, however it does somewhat stop the progression of the disease. It starts out with a 4 dose loading phase over 8 weeks than another dose every 4 months; for life. Reign received his 1st dose via spinal injection in July 2019 and gets this every 4 months. Its estimated cost in the first year is $980,952 (Cdn) and $457,777(Cdn) each year after that; for life.
We are grateful he is recieving Spinraza, however we were not satisfied, nor willing to accept a lifetime of spinal injections, confined to a wheelchair, being fed through a feeding tube and on breathing support. There had to be other options outside of Canada that we were not yet aware of. We started researching any other possible cure options and we found gene replacement therapy in the United States.
Gene therapy replaces a faulty gene or adds a new gene in an attempt to cure disease or improve your body's ability to fight disease. Gene therapy holds promise for treating a wide range of diseases, such as spinal muscular atrophy, cancer, cystic fibrosis, heart disease, and hemophilia. On May 24, 2019 - AveXis, a Novartis company, announced the US Food and Drug Administration (FDA) has approved Zolgensma® for the treatment of pediatric patients less than 2 years of age with spinal muscular atrophy. Its a one time treatment known as the World's most expensive therapy at a cost of almost $2.9 million Canadian and it works!
Check out Evelyn's story on youtube at: https://youtu.be/yRrqbvUv6gQ
We were literally brought to tears after watching Evelyn dance for her Neurologist, completley recovered from all the symptoms of SMA. We did the math and every 5 years of Spinraza pays for a dose of gene replacement therapy. In the long run, it's much cheaper and far more effective! We had to go for it and create a way to get it, not just so Reign can dance but so that every infant diagnosed with SMA can dance! So that other families affected can dance and the for the medical professionals who for 50 years have been telling families, "I'm sorry there is nothing we can do, take your child home, go for grief counseling and let nature take its course." So that they can instead say "we have a cure for that" and do the dance of Joy as we come together collectively to eradicate SMA and other genetic diseases once and for ALL!
He is such a smart, happy, wonderful baby, and has brought our family together. He is so filled with joy and always has a smile on his face. We know that this little baby will do TREMENDOUS things in this life and that he will make a difference in the world. He already has touched many lives and continues to inspire people.
On Aug 31st Reign stopped breathing and had cardiac arrest in the middle of Buffet Royale. He was resuscitated and taken in an ambulance to the Stollery Childrens Hospital. They excavated him (took the breathing tube out of his lungs) once he got strong enough, and has been on his bipap machine 24/7 ever since. Reign now has a g tube to feed him 17 hours a dayas he is not currently eating orally, and an oximiter monitoring his oxygen level and heart rate at all times. We had many medical struggles while at the Stollery Childrens Hospital for 7 months, including code blues, lung collapses and a seizure reaction to anesthetic. We did however get discharged mid March (after one more 911 call and a trip back for 2 more days). Reign is currently stable and growing.. FAST ❤ He loves painting pictures, balloons, cuddles, smiling, blowing bubble, baths, drums and grabbing stuff. We are so blessed to have this wonderful baby in our lives. We are so grateful to be back home, however our days are filled with medical equipment, nurses (every night) and appointments.
Its possible that no one, will ever have to die from SMA ever again. Its possible that all who are diagnosed with SMA and suffer from the symptoms of it, can live symptom free and be healthy, prosperous, able bodied and make a positive difference in the World. I am requesting your help in making this treatment available to all Canadians by supporting Dancing in the Reign with financial contributions and sharing this fundraiser with everyone you know.
We are going to have to pay for a couple treatments together, to show Canadians this works and we need it here in Canada to save and transform lives! We will do whatever it takes to help push this through, we request your partnership and donations, and we welcome any ideas, thoughts and suggestions to help make it happen. Thank you for your time and consideration.
Some of our news segments:
- Deborah Csongradi
- Alexandra Budai
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