Skills that he learned when he was a 1 yr old, he has begun to lose--sometimes his ability to have balance when sitting or standing, ability to walk and talk, and his ability to understand, learn and think.
In the United States, according to the National Institutes of Health, between two and four of every 100,000 children are born with Batten disease. There are a few subtypes of the disease, each affecting a different gene, involving a different deficiency. Damion has been diagnosed with subtype CLN2, missing the TPP1 enzyme. Damion's symptoms initially appeared around the age of four; that's when the seizures began. Speech delay was his first noticeable sign of disease and then he lost balance and motor functions. After that, he stopped communicating.
Although Colorado Medicaid was Damion's insurance coverage, they were slow to agree to cover the treatment with the enzyme replacement. So after 7 months, I decided that the best option for treatment was to enroll Damion in private insurance during open enrollment which is only during Nov and half of Dec. If I missed that opportunity, there was no idea how long it would have taken for Medicaid to approve treatment. He received a port in his brain to receive the medication on Dec. 28th and with this new insurance plan, his treatment was approved in a manner of days and he began treatment on Jan. 9th! He will have to have this treatment every other week for the rest of his life, given in the hospital. Right now his treatment is given on the neurology floor at the Children's Hospital of Colorado. Damion is the first patient to be treated for this disease in Colorado. He is under the care if his neurologist, Dr. Scott Demarest, and his team.
There are costs associated with his medicines, the monthly insurance premiums, travel costs, copays, and so many other things that are needed to take care of him. I have been paying all costs out of pocket, including his monthly insurance premiums, and it's starting to become overwhelming.
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