Zoey’s SMA Journey

As most of you know, Ali and Kameron’s sweet daughter, Zoey Grace, has recently been diagnosed with Spinal Muscular Atrophy (SMA) type 2. Zoey hasn’t been able to stand unassisted or walk on her own at 17 months old. Doctors weren’t concerned at first but recently became worried and further testing was conducted.

1 in 50 people are carriers for SMA. Kameron and Ali are both carriers and were unaware until now. Both parents must be carriers and even then it is only a 25% chance that their child will have SMA. Zoey is very rare and thus very special.

SMA is a genetic disorder in which the SMN1 gene is missing from Zoey’s DNA. When this gene is missing or not working properly, the body cannot make enough SMN protein, which is needed for motor neuron cell survival. Everyone is born with a certain amount of motor neuron cells, which are responsible for communicating with the muscles and telling them to work properly.

Without enough SMN protein, motor neuron cells become weaker and weaker and eventually stop working, lose all function, and die. As a result, things many of us take for granted, like breathing, eating, speaking, walking, and even lifting the head, become difficult. Anything involving your muscles is affected with SMA.

Thankfully, Zoey qualified and received a brand new gene therapy called Zolgensma. It was a 1x infusion she received on November 12. Up until 3 years ago, no FDA approved treatment existed for SMA. Zolgensma replaces the non-working SMN1 gene, so that Zoey’s body should start to make the necessary protein needed for motor cell survival. Thus, in a perfect world, the disease should halt in progression and no worsening should occur. There is no way to “test” if the gene therapy is working the way it should except to see a little improvement in symptoms with no decline.

Saying that...there is no actual cure for SMA. Kameron and Ali are praying the Zolgensma gene therapy will work perfectly and sweet Zoey will be able to stand and walk one day and live the most normal life she can.

They have chosen a team of doctors for Zoey up at Lurie Children’s Hospital in Chicago. There will be quite a few visits within the next few months/few years that will require additional traveling expenses. Zoey will also need an extensive physical therapy team requiring multiple weekly sessions that won’t all be covered by insurance.

I’ve created this fund so that those that are able can donate to help with these expenses. All money raised will be given to Ali and Kameron. I know times are hard right now so if you are unable to donate, please keep Zoey and her family in your prayers. They are praying for a miracle for their sweet baby. Zoey is such a vibrant, happy baby who is is a such a fighter and loved by so many!

If you want more education on SMA, I encourage you to go to cureSMA.org as well as Zolgensma.com to learn more.