August is Spinal Muscular Atrophy awareness month. Our son Orson has SMA type 2, he started showing signs at 5 months, was diagnosed at 8 months and is now 1 year old.
To bring awareness we wanted to share how SMA has affected Orson: - he has had pneumonia 2 times this year and was admitted to the hospital - he cannot sit on his own so needs special support like the Tumble Chair
- he needs devices and Easter Seals helps fund them, we walked for Easter Seals to support them - he has undergone a sleep study and will need to do so every year to make sure his lungs are strong enough during sleep to provide him with enough oxygen - he uses arm braces during physiotherapy to help maintain the muscle tone he has - He needs to be in his standing device for an hour a day so that his hips and bones develop properly - we celebrated the opening of the Challenger baseball accessible diamond in Bolton with the Blue Jays - bath chairs are also good for enjoying the beach - we support causes that support Orson like the Dairy Queen blizzard for Sick Kids day
- Orson uses a cough assist machine daily to help bring and keep fluid and mucus out of his lungs, Orson likes to keep it fun 😆
These are some of Orson’s struggles due to SMA, the only available treatment is called Spinraza. The government will not cover the high cost of $750,000 for his first year of treatment. SMA Canada is fighting this everyday so that our children can receive access to this lifesaving drug. #spinraza4all
SMA is a degenerative disease robbing my baby of his muscle function and though the smallest tasks are exhausting to him, he still smiles and laughs and brings to joy to us everyday.
We love you Orson, let’s fight this together #curesma
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