Reign is 2 years old and suffers from Spinal Muscular Atrophy type 1. He was born with scoliosis and a concave chest. He also couldn't move his legs or lift his head. We took him to the doctors over and over again trying to get some answers but they kept saying "don't compare your baby to others, he will get it it he gets it". However it only got worse 💔 Reign stopped being able to breastfeed and started choking. He wasn't gaining any head or leg control and his chest dip was bigger. We requested a new pediatrician. As soon as the new Dr looked at him, she knew it was "floppy baby syndrome" (SMA). She sent us to a bed at the Stollery Childrens Hospital when we stayed for just over a week, got his official diagnosis, he got an NG tube for feeding and bipap at night. We took him home and started studying Zolgensma, the ground breaking gene therapy only in the US at the time (summer 2019). A month after we got home Reign had a cardiac arrest in the middle of Buffet Royale.
It was chaotic and scary. He had to be resuscitated and brought back to the Stollery where we stayed for 7 months. He was on full life support and slowly weaned off after many complications such as lung collapses and a seizure reaction to anesthetic. We have now been home for a year and have been fundraising for Zolgensma for a year and a half. We tried to get Reign into every single funding opportunity available such as the lottery, the SAP and the case by case funding. However he has been denied funding by EVERYONE. It has been tough watching everyone else get dosed while Reign gets left behind. Reign is now the ONLY baby in Alberta who hasn't hasn't dosed. And now every baby to come will be dosed, except Reign. This isn't fair or right. Reign can recieve Zolgensma here no problem if we had the 2.8 million to pay for it, however our government and AHS have left Reign out. This is our last chance to get Reign dosed before he becomes ineligible. All of his doctors know that this miracle drug will change his life. Our only option now is to raise the money ourselves and continue to appeal the denial. We need community support to make sure Reign doesn't get left behind.
Reign is currently on 24/7 bipap, fed via gtube, monitored by an oximiter, suctioned 10 times a day and is getting a cough assist. Zolgensma can change all of that. Even if he could come off the mask for a couple hours a day, start swallowing and gain strength in his body, that would change his whole life 🥰❤❤
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