She’s been in and out of the hospital ever since. Genetic tests have revealed that she has a rare mutation in the COL4A1 gene that has had major repercussions for the development of her brain.
Although she is a year old, she can’t walk, crawl, or support her neck. Daily seizures are slowing down her development and making it difficult for her to sleep, learn, and have a normal life.
Maddie is unable to swallow. She had a procedure to install a tube in her belly that allows her to eat. She uses a special ketogenic formula to help reduce her seizure symptoms.
Maddie is in a lot of pain from her seizures. Morphine is helping for now but it isn’t a long-term solution. Anti-epileptic medications have helped a little bit, but so far the right combination of drugs for her hasn’t been found.
Getting Maddie’s seizures under control would mean getting a second chance at life. The right medications have to be found to control her symptoms. Funds raised will be used to pay for Maddie’s ongoing medication and travel expenses.
Any support you are able to offer this family is greatly appreciated.
- Nicole Thomas
- Jeannie,Ike and Jessica Forrest
- Margarita A
- January Bumper
Organizer and beneficiary
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