Tag: cln3

Juvenile Batten disease is a fatal, genetic disorder of the central nervous system that begins in childhood. Early symptoms of this disorder appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of vision, motor skills and the abilities to eat and initiate elimination. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is fatal by late teens or early twenties. This was 2004 when she was 4. She was perfect.

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal? Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500 Not being able to do the things we used to do and go the places we used to be able to go is taking its toll on me and the kids. We have the van which was generously donated by our friends, family and wonderful strangers through GoFundMe but it’s 20 years old and not reliable enough to go long distances. Does anyone out there have one of these? What do you think? www.accessunlimited.com