Estella's Wish to End AHC

For those of us who are parents, we all remember having our baby put into our arms for the first time and having our hearts burst with pure and unconditional love for that child. It is at that moment that, all of us parents know, we will do anything for our child. We will move heaven and earth if we have to.

Thankfully, most parents don’t have to. But some of us - we actually do.

Our family has spent the last four years in the battle of our lives. Every minute of every day we are faced with the horrific reality of the disease that is slowly killing our daughter and suffocating our family. This disease is known as Alternating Hemiplegia of Childhood, or AHC for short.

For our daughter, AHC causes episodes of paralysis, dystonia, and nystagmus. These episodes come on without warning and take her from a happy, playing, dancing four year old to a helpless, paralyzed, dystonic child screaming in pain. During these AHC episodes, Estella loses her ability to walk, crawl, swallow, and even hold her head up. Her hands become clenched from dystonia, and this same dystonia eventually travels throughout her entire body, causing levels of pain I’ve never experienced in my lifetime. Eventually, she loses consciousness because the pain is so great. These episodes last from minutes to hours to days at a time, but we never know how long it will last until it is over. Estella is completely aware of what is happening during these episodes, but she’s a prisoner inside her own body, and has absolutely no control over what is happening to it. As her parents, there is literally nothing we can do. We hold her as her body writhes in pain, we try to massage dystonic muscles, we monitor for breathing, maintain her airway, see the look of fear in her eyes…and we again feel our hearts shatter inside of our chests.

Every AHC episode has the risk of skill regression, permanent brain damage, and sudden death. When an AHC episode starts, we don’t know if we will get our little girl back on the other side of the episode.

There is no treatment.

There is no cure.

Yet.

This is where we need your help. We had the honor of meeting some of the leading doctors, researchers, and scientists studying AHC earlier this year, and they have identified three different avenues to create a gene therapy to cure AHC. All three projects are happening right now, and all three are showing great promise. We now realize the problem is not whether or not AHC can be cured; the problem is getting the funding to do it. Our disease only affects about 300 people in the United States, so there is no funding for the disease outside of what parents can raise themselves.

We will do anything for our daughter, just as you would for yours. With the humblest of hearts, we ask for your help in raising money to develop a gene therapy treatment for Estella. All funds will be used for the costs associated with the development and administration of an AHC gene therapy cure for Estella and for her needs as they pertain to this disease. Any remaining funds will be donated to an AHC organization of our choice. With your help, Estella and other families in our position can hold on to hope that there is a future for our children.

The science is there. The money is not. Let’s change that.

With deepest gratitude,

Estella's parents -- Stephen & Lacey Henderson