Jackson was happily born on January 20, 2013. As he continued to grow, he met all of his developmental milestones and because of this, his Pediatrician was not greatly concerned when Jackson did not walk independently until 19 months. Shortly after the age of two, Jackson's walking became more wobbly, turning his feet inward and he began walking on the sides of his feet; a Physician recommended braces for his legs, as well as Physical Therapy. Soon after, Jackson developed another new condition of the eyes - Nystagmus. By this time, Jackson's Pediatrician was becoming more concerned and referred us to UNC for numerous tests that continued over the next year and a half. The test results left not only us, but his Physicians stumped - the results were all "normal." Finally, my sister read an article about "Gene Sequencing" which sounded like it could shed some light on what could be going on with Jackson. One of Jackson's many Physicians agreed with this idea and after this new test was complete, we had our diagnosis. INAD.
After doing our own research we were shocked to find out that the only funding for researching a possible cure, came from the family and friends of children with INAD. As a parent, you want your child to have a long and healthy life, so it was very stressful to realize that our child's (& other children's) life depended on raising money for a cure. We decided not to focus too long on that and instead on taking action!
This is why we need your help and we THANK YOU for it!
Just a small donation will go a long way to helping us meet our goal for the INADcure Foundation!
We have decided to fundraise for the INADcure Foundation. This is a cause that is very important to us. And until now, there has not been a unified voice, or a centralized effort, to raise funds necessary for scientific research into finding better treatments and ultimately a cure for this devastating disease. Thanks to the efforts of a some determined and caring individuals, the INADcure Foundation has been formed and is the only U.S. based nonprofit dedicated exclusively to INAD community.
For those of you unfamiliar with INAD, Infantile Neuroaxonal Dystrophy is an extremely rare, inherited degenerative disorder of the nervous system. The symptoms of INAD usually start to appear between the ages of 6 months and 2 years. A common pattern in young children is loss of previously acquired skills, mental and physical ability and progression of the disease over time. The progression of INAD is usually rapid after the initial onset of symptoms. Many affected children never learn to walk or lose this ability shortly after learning it. During the last stages of the disease, severe tight or stiff muscles, progressive cognitive decline and problems with vision have a large impact on daily life. Unfortunately, many children with INAD do not live beyond age 10, but some do survive into their teens or later ages.
Currently, there is no cure for INAD. And being that INAD is a very rare disease, there is little funding for research. But that shouldn't mean that the families impacted by INAD can't have hope. It just means that we all have to come together to help.
When we saw that the INADcure Foundation was formed, and needed help, we knew that this was something that we could easily do.
Check out our fundraising page and please consider making a donation to help us reach our goal. Your support will truly make a difference in the lives of the families impacted by INAD.