Fundraiser planned to help Dexter family whose son has rare disease

Kim Watkins was in Tennessee just starting a new career when she got a phone call that turned her life upside down and dimmed the bright future she thought her family would have.

The phone call came in May and confirmed the familys worst fears. Doctors have found lesions on the brain of Glen and Kim Watkins 8-year-old son, Hayden. The lesions are a symptom of adrenoleukodystrophy (ALD) a rare disease that affects 1 in 20,000 boys.

The lesions are eating away at Haydens brain and will cause irreversible brain damage, loss of the boys five senses and possibly death if not caught in time. Hayden has a 1 to 2-year window of opportunity to rectify the situation.

It successfully takes a transplant to stop this or in two years he will be reduced to a vegetative state, Kim said.

Haydens family had known this day could come since he was born. He had been getting annual MRIs done every October, but since the family was slated to move south, the MRI was bumped up by six months. It was during this recent scan that the lesions were first spotted.

The family is on a waiting list to receive a stem cell or bone marrow transplant.

Once they get the call, the Watkins will travel to Minnesota for surgery and recuperation. The whole process could take five to seven months, all of which the family will have no medical coverage or income.

Because it will be performed out of state, Michigan Medicaid wont cover the surgery, Kim said. Its not right. There are only five hospitals in the country that do this type of surgery.

While at the University of Minnesota Childrens Hospital, Hayden will undergo chemotherapy, the transplant and 100-plus days of recovery. Kim and Glen will be with him the entire time, she said.

To help the family with those expenses, a grassroots movement has come together to schedule a fundraiser Aug. 23. Continued...

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Fundraiser planned to help Dexter family whose son has rare disease