I want to talk to you all about Batten Disease. Why? Because it is a rare disease, but also because I saw it on the news. Click HERE to see it. Rex Timko has Batten Disease. His family has a home care nurses come into their home to help the parents. Their insurance company is not allowing them to have the home care anymore. It was extended for 90 days. The Timko's are fighting. I wish them luck and I pray they win their appeal. How can an insurance company do this to them? If I was in their position, I could not carry my child to or from somewhere due to my back. I think they need home care nurses to come into their home. Are they nurses, doctors themselves? No.
I had this disease picked out prior to seeing the news on Rex Timko, but I moved it up. I felt it was important since there was a story out there to share. But, all rare conditions are important to share, to learn about.
Awareness Days for Batten Disease is June 5-7.
There are 2 websites that parents, physicians, caregivers can do to for more information. Here are the 2 websites:
Symptoms:
Children with juvenile Batten disease experience most or all of these symptoms in the following and sometimes overlapping order. However, each child is different so the exact onset and severity of symptoms cannot be predicted.
-Blindness or vision problems in previously healthy children between 5 and 10 years old
-Seizures usually begin about 9 years old but can develop at any time during the disease
-Subtle to more pronounced personality changes and behavioral problems beginning age 6
-Intellectual decline and disability. Inability to keep up with classmates.
-Echolalia (repetitive speech) followed by a loss of speech
-Dementia, Psychosis and sometimes hallucinations
-Motor problems – coordination, ataxia, Parkinsonism
-Potential cardiac involvement in the late teens to early 20s
-Premature death in the late teens to early 20s
{Information from HERE}
Thanks for reading,
Melissa
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