OTHERS

Farah’s fight with SMA

Rare Disease & Syndrome

Sabina Barkhu

SMA

Farah is a sweet 2.5 year old baby girl that is fighting a condition called Spinal Muscular Atrophy type 1 (SMA). Farah was born a typical kiddo but began to have symptoms around two months old, things didn’t seem right but her doctor brushed away our worries. At 5 months old Farah was diagnosed with SMA. She was barely able to move except for tiny little hands. SMA is a degenerative muscle wasting disease which is not tested while in utero or on new born screenings. This cruel disease robs the child’s ability to crawl, sit, walk, eat and even breath on their own. Farah lost her swallow at five months old and requires to be fed through a gtube implanted in her tummy. There is currently no cure for SMA, however there is treatment which halts the progression of the disease. Farah is receiving treatment in the form of spinal injections every four months. As my Farah grows so do her needs. We are looking into a power chair in the near future which requires an accessible van that we currently do not have. We have included a link to a gofundme fundraiser for Farah in hopes of some support and to spread awareness about SMA.

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