Andover: Help for little boy with rare genetic disease

Source: TownshipJournal.com
“Sometimes, real superheroes live in the hearts of small children fighting big battles.” The author of this quote may be unknown, but it rings so true when it comes to a 19-month-old who lives in Andover.
At 11 months, Drew Anderson was diagnosed as having mild cerebral palsy. But his mother Brianne Anderson, wasn’t convinced. “My gut instinct was to keeping searching for answers,” she said. “We decided to make an appointment at Children’s Hospital of Philadelphia. There, he under went a series of testing for five long months. It wasn’t until he started genetic testing that he was diagnosed with Tay-Sachs at 17 months old.”
Tay-Sachs is a disorder that progressively destroys nerve cells in the brain and spinal cord. At this stage there is no cure for Tay-Sachs, but there is treatment which is mostly supportive and directed to providing adequate nutrition and hydration, managing infectious disease, protecting the airway, and controlling seizures. Unfortunately most of this, including medical devices, aren’t covered by insurance. There are several studies and clinical trials that are on the brink of FDA approval.
“We’ve researched the currently available trials and found them not promising for Drew’s situation,” Anderson said. “Because this disease is so rare funding for clinical trials and FDA approval is scarce. We are however hopeful for a medical break through and are very open to clinical trials if the potential benefits outweigh the risks.”
Anderson and her husband, Adam, are doing all that they can for their son. “We started physical therapy in July and he started to slowly gain some strength,” Anderson said.
“We noticed the best overall improvement to his health from water therapy. Since insurance limits the amount of sessions, we decided to enclose our hot tub so Drew can continue his water therapy year round from home.”
Mark Malone, the owner of Malone Construction, is a family friend and has been helping the family with the project. This is both a big and expensive endeavor
The couple has two other children: Kayleigh, 7, and Julie, 4. “The girls are incredible supportive and helpful,” Anderson said. “The biggest challenge for them is trying to be aware of germs and keeping everyone as healthy as possible.” She added, “Our family and friends are extremely supportive. The out pouring of love has been overwhelming and humbling. Much of the cost of his care has not been covered by our insurance so the financial support has been very supportive.”

To make a donation to help Drew, visit: YouCaring.com< /a>

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