That is the diagnose we received for our daughter Jaylynn in 2007. Jaylynn was 9 years old. Up until she was 5 she was developing normally. She was a happy little girl. By the time she started kindergarten the problems began. Vision problems, then the seizures, a few misdiagnoses because the disease is so rare that most doctors have never heard of it. Then, after years of not knowing what was wrong with our daughter the blood tests confirmed it, our daughter has Juvenile Batten Disease.
At that time we were stationed in California. Soon after the Air Force decided to move us to Germany, where we still are to this day. We are still a military family and have been for the past 20 years.
As this awful disease progresses and takes more and more of our daughters abilities, like talking, seeing, walking and thinking, it is getting more and more difficult for us to transport her in our car. She has tremendous difficulties getting in and out of a car and her wheelchair. She is now almost 16 and weighs 140 lbs. It is almost impossible to go places with her for one person as she has very little fine and gross motor skills left.She must be able to go to doctors appointments and she should be able to enjoy trips as long as she can.
We would really love to do these things for our child but we need some help getting the appropriate vehicle which will have to be a wheelchair van. We need your help to get the money for this van together. With this van our daughter will be able to attend family outings and doctors appointments. Transporting her will be easier for us and her.
I personally have been a service member for 20 years and feel absolutely embarrassed to ask for help here. The only reason I do this is to make the few years our daughter has left to live as comfortable as possible.
Thank you for your help and please feel free to email me with any questions.
If we don't raise enough money for a van we will use the raised money for medical bills and equipment.
www.bdsra.org for information on Juvenile Batten Disease
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