There are many older children, teens, and adults living with SMA. They have been waiting and hoping for a long time for a treatment. These survivors have beaten the odds and endured struggles that most can only imagine. With very little to no support from the medical community, they have pushed for standards of care for SMA patients and they have led the way in establishing life saving protocols. Always with the hope of a treatment, their families have raised millions of dollars for research. For many years, they have waited and hoped for a treatment.
Here is the story of one of them.
She had symptoms at 6 months, but 25 years ago, being diagnosed with SMA was a lengthy and painful process. There were many conditions to out-rule. The first possibilities given to her parents ranged from a thyroid condition to a brain tumor. There were countless tests performed, and after several months, she had a surgical procedure to take a piece of her thigh muscle. This led to the diagnosis of SMA. Her devastated parents were told to take her home and love her, she would die within the next two years. They pleaded that surely there was something they could do, someone somewhere that could help. They were assured that this was not a possibility. Their beautiful baby was going to suffer and die in early childhood.
After several weeks of intense grieving and prayer, her parents made a decision to fight for their baby. What if the specialists were wrong? Whatever the outcome, they had to know that they had tried.
Without the internet, they searched for hope. They traveled across the country and exhausted their finances, spent hours in libraries studying books for answers, argued and fought the medical community, and with God’s direction, found many ways to help their daughter. The good days outnumber the bad, and with hearts full of thankfulness, this fall they will help her celebrate her 26th birthday.
For many years, they have tried to extend hope and help to other families hearing the devastating words, “Your baby has SMA and there is no available treatment.” But today, there is so much hope! With newly developed treatments, instead of getting weaker, babies and children are gaining strength. They are breathing without mechanical devices, they can swallow and smile and sing! Many are sitting and some are beginning to walk! We don’t know what these treatments will offer older children, teens, and adults, but we know without a doubt, they deserve the chance to try them. They have waited long enough and there is finally something that could stop their progression and possibly help them to gain strength! It is time to put an end to their agonizing wait! #theFASTmovement #LetThemLive