Our sweet baby girl was born early in the morning on Friday February 7th. We were so excited to finally see her little face. She is perfect in every way.
6 days after Hayden was born we received some devastating news. She tested positive for Spinal Muscular Atrophy (SMA) on the Indiana newborn screen. SMA is a neuromuscular genetic disorder. It affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA affects approximately 1 in 11,000 births, and about 1 in every 50 Americans is a genetic carrier. While SMA attacks physical functions of the body it has no bearing on cognitive development.
We are so grateful that 18 months ago SMA was added to the newborn screen in IN. With this disease it's imperative that treatment begin immediately, even before symptoms appear. There are currently 2 different types of FDA approved treatments, with several others in clinical trial. The treatment we are pursuing has only been available for about 2 years. Had this been Avery, we would be in a totally different position. We are so thankful for the work and sacrifice of those before us to get this on the newborn screen and for the advancements of medicines and treatments like this.
Regardless of what type of treatment is chosen, it's so important that therapy begins as soon as possible. In infants with SMA type 1 like Hayden, 90% of motor neurons have been lost by six months of age. And once these neurons are lost, they cannot be regenerated.
Beginning therapy as early as possible is the only way to prevent this motor neuron loss and to preserve her quality of life.
The road ahead will undoubtedly be long and uncertain. With the treatment we are pursuing the oldest living child to have received it at a similar stage of life as Hayden is only 6 years old.
We share this news and ask that you would please pray for our sweet girl. The past week since her diagnosis has felt like a lifetime. But our God heals. He has proven his faithfulness time and again already. We have been given the gift of peace knowing that He is in control.
Love,
Hugh, Logan, Avery & Hayden
Hugh and Logan, We are thinking about you and that precious baby and will be praying for you.
Hugh and Logan - we are holding you and your precious, beautiful baby girl in our prayers. Julie and George Bell.
Logan, your family will be in our thoughts and prayers. Please let me know if you need anything.
Hugh and your family - so many thoughts and prayers headed to you and for you and your beautiful little girl.
Logan and Hugh - God is more powerful and merciful than any of us can imagine. I will keep all of you in my prayers - not just for healing for Hayden, but peace for you and Hugh.