Help baby Crew’s fight with SMA
Crew Delia was born on May 6, 2021 and was perfect and healthy as could be.
On May 18th, Crew’s parents received a phone call that they will never forget. Their perfect baby boy was diagnosed with Spinal Muscular Atrophy (SMA) through newborn screening.
Spinal muscular atrophy is a rare genetic neuromuscular disease that slowly kills motor nerve cells in the body and affects the muscles used for activities such as sitting, standing, walking, breathing and swallowing.
It is the number one genetic killer of infants under the age of two years old and affects 1 in 11,000 babies born each year.
Through confirmative testing at Children’s Hospital in Jackson, MS, Crew was officially diagnosed with Spinal Muscular Atrophy. Although he is not showing symptoms currently, without treatment he will not be able to walk on his own and may require feeding and/or breathing support in the future.
Thankfully, there is a recent (2019) FDA approved one time IV infusion Zolgensma that essentially replaces the gene he is missing with a new, working copy of the gene and stops the progression of SMA. With this treatment, it is hopeful that Crew will be achieving developmental milestones like crawling and walking on a normal timeline that a non SMA child would. This drug is the most expensive, single use drug in the world at 2.1 million dollars, making it a fight with insurance to get it approved.
After weeks of working on getting this drug approved, Crew’s primary insurance offered to cover 500k of the cost, not even a fourth of the cost of the 2.1 million dollar drug. His parents were optimistic that the remaining balance would be covered through secondary insurance and assistance programs, however, this is not looking very fortunate now. The drug will not be released from the specialty pharmacy until there is an agreement with both insurance companies on the cost coverage of the drug.
How is it possible to put a price tag on a baby’s well being when this drug is a LIFE SAVING treatment? It is SO unfortunate and saddening that our healthcare system seems to work against us when help is needed most.
I am asking for help to get this story out to the public and raise the funds necessary for this medication. It is important that Crew receive this medication ASAP, before he develops any symptoms of the disease. If untreated, these symptoms are likely to arise within the next couple months of his life.
Most importantly the family is asking for prayers for Crew’s journey and all the babies and adults battling this disease.❤️
*The family is hopeful that at least a small portion of this treatment will be covered by insurance. The family will donate any excess funds they may receive to the Cure SMA foundation.