In March of 2017, our crazy, fun and vibrant 5 year old named Joseph was diagnosed with a rare form of Batten disease. Batten is a terminal and degenerative brain disease and at the point of Joseph’s diagnosis, his form of Batten had no clinical trial, and no funded research focused on finding a treatment. The progression of the disease is fast paced, and is a combination of blindness, epilepsy, Parkinson’s and Alzheimer’s, all showing up in one little boy. At the time of his diagnosis, we were told to make end of life plans for Joseph, and that there was no hope to help him. We didn’t know it then, but Joseph’s story was just beginning…
Since his diagnosis, we have found other families, scientists, and doctors who have independently committed themselves to finding treatment for Joseph’s form of Batten. These teams of incredible people are working together, and have made it possible for us to actually partner to resource a life-saving gene therapy trial, which can stop the progression of the disease. The reason no one before has done this, is because like most of the 7000 rare diseases in the world, treatment relies on the hard work of families who are fiercely dedicated to resolving the disease. The process is challenging, and requires both finding the right scientists and hospitals, and then funding their work into a clinical trial. Fortunately for us, the doctors at UT Southwestern and Children’s in Dallas are in the early stages of developing a gene therapy program that can help Joseph, and many other children like him.
Our family has started Joseph’s Foundation for Batten Hope to stop Joseph’s form of the disease, and to bring hope to others who receive a similar diagnosis. We have initiated a fund at Dallas Foundation to help serve the vision of gene therapy at UTSW, under the guidance of Dr. Berge Minassian, Chief of Pediatric Neurology. As a family we will dedicate ourselves to helping other children with forms of neuro-degenerative diseases like Joseph’s to become their own advocates for gene therapy through this program. Our hope is that others will be able to work toward realizing treatment in time for their children, and to have the same chance at treatment that is possible for Joseph today. Right now, we need your help to realize a treatment for Joseph, and for many children in the future.
We are blessed and grateful for work of other families and scientists that have made hope for Joseph possible, and to you for partnering with us in the goal of Batten Hope. Each day brings a new opportunity for Joseph’s disease to be stopped, and ultimately cured! Please help us bring that hope to Joseph, to rare forms of Batten, and to other families of children working to change their rare-disease diagnosis!
God bless,
The Hann Family
