Maia was born in January of 2023. Four days after she was born, we got a voice-mail saying that her newborn screen came back abnormal.
Within two weeks Maia was diagnosed with Spinal Muscular Atrophy Type 1 (SMA). SMA is a genetic degenerative muscular disease which causes the progressive loss of the ability to move, eat, and breath.
Maia was born without the ability to produce a protein (Suvival Motor Neuron 1). This protein causes motor neurons to fire, and without it, they die. Type 1 is the most severe, and most children do not live past their second birthday. Since 2021 there are 3 treatments available which can slow the progression of the disease. However, any motor neurons that die prior to treatment cannot come back.
By 5 weeks, Maia had lost all the movement in her body. She also lost her voice, so that we could only hear her if we were in the same room. She lost her cough, and would choke/gag when she ate.
Jordan and I desperately called different hospitals all over the US trying to get her into clinical trials for any possible treatment. A neurologist from Phoenix Childrens Hospital saved her life. 5 days after we got in contact with him, Maia was able to start medication to slow her degeneration.
Progress has been slow for Maia, but we have celebrated every improvement. We called our family the first time Maia moved her legs in the bath (she did 4 kicks in the water around 2 months).
Maia is currently 9 months old, and doing things we were told she would never be able to do. She is sitting, rolling, feeding herself, and getting more mobile every day.
This is a lifelong disease, with no “cure”. She will have to work hard at occupational/physical therapy her whole life. She is significantly weaker than other children her age, and physical milestones will happen at her own pace.
There are so many unknowns with this disease. Children have never survived past 2, so we have no idea what her life will be like, or what to expect.
We are hoping to help Maia achieve as much independence as possible. She is the sweetest, happiest girl, who loves her big brother and being with her family. It is a miracle that she is still with us, and we love every minute we have with her.