Helping Hannah Jean

 

At 4 months old, Hannah Jean showed troubling developmental signs: an inability to track things visually and poor head control. Soon after, she was diagnosed with Canavan disease, a rare, degenerative brain disease that hinders the brain's ability to send and receive messages. There is no cure, and most patients do not survive to adulthood.

Several times a week, Hannah Jean goes to multiple therapies to gain what abilities she can, but she has very delayed development: she is unable to hold her head up, sit up, and roll over on her own. Since August, she has been eating via a feeding tube due to difficulty eating.

We hope she will be an eligible candidate for upcoming clinical trials targeting canavan-gene replacement, as there is no approved treatment.

As Hannah grows, we continue to adapt everyday items to suit her needs, but our efforts pale when compared to the costly medical tools available. Funds from this venture will go to adaptive devices and mobility aids (specialized support strollers/wheelchairs and seating). We will also use financial gifts to invest in therapies, supplies, specialized diet plans for enteral fed toddlers, travel and clinical trial costs that insurance will not cover.

 

Hannah Jean loves snuggles and water and gives the best toothy grins! Any support is welcome, and thank you for hearing our little girl's story.