Help for little boy with rare genetic disease

By Laurie Gordon
ANDOVER — "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 little 19-month-old boy who lives in Andover named Drew Anderson.
Anderson was developing perfectly until he was about five months old. At 11 months, he was diagnosed as having mild Cerbal 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 longs 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 al 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, but when it comes to being positive, that's the attitude you'll find with the Andersons. With them, hope just springs eternally and Anderson said, “Our advice to others in a similar situation would to never give up, never stop searching for solutions, and just because a doctor says something doesn’t mean it’s true. We also feel we need to live life one day at a time, and this experience has renewed our faith as Christians.”
The couple has two other children: Kayleigh, age seven, and Julie, age four. “Although this has been an emotional experience for the whole family; 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 health as possible.”
Anderson said, “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 this end, a cousin named Erica Farrell started a YouCaring.com fund to help the family with all of the expenses.
“Although we initially resisted any financial support from friends and family, she set up the online fundraiser “Hope For Drew” at www.youcaring.com which has been a tremendous help,” Anderson said. “In addition to the “Hope for Drew” fundraiser we are in the process of registering a 501c3 foundation in Drew’s name to help raise money for research.”
Farrell said, “Drew is a special little man, and he deserves every little thing we can give him. He will need special equipment to assist with feeding, mobility, sleeping, breathing and bathing. In addition, he will also require medications and the help of highly-qualified specialized physicians. Of the YouCaring fund she added, “Our goal with this project is to lighten the heavy financial strain on the family to allow them to prioritize time with Drew and the girls. We encourage you to share their story, and urge others to follow your lead in supporting the Andersons through this difficult time. Our support can make it just a little bit easier on them all. Any donation is appreciated more than you can imagine. Please keep Drew and his family in your prayers and surround them with continued love and strength.”
Lucille Anderson is Drew's grandmother and can't believe the strength her son and daughter-in-law are showing. “They are doing everything for this child. They live life and let him live life.” She said above all, “They aren't feeding into the disease or living in that cloud. They are not giving in to the diagnosis but are doing what they can for him to help get through it."
To make a donation to help Drew, visit: www.youcaring.com/andrewdrewanderson-745214 You can also find the fund by going to www.youcaring.com and typing in Hope for Drew in the search area to the top right of the page.