On 9/28/17, the Stanley's lives were forever changed. They were given the worst news imaginable. Their bright and loving 8 year old son, Dean, was diagnosed with Adrenoleukodystrophy, or ALD for short. This came as a shock and with little warning. While there are still test results pending that will determine the exact type of ALD, the diagnosis is certain and Dean was given 12-18 months to live. Please help this family in their fight to change this prognosis. Despite the prognosis, this does not mean they will give up in their fight against ALD!
ALD, is a deadly genetic disease that affects 1 in 18,000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers. The most devastating form of ALD appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia.
While there is no cure for this disease, this family will never give up hope that an answer is out there somewhere to save the life of their beautiful son. Their world has been turned upside down and they are searching for their next steps; however they have an amazing team of doctors working with them and Dean. Dean will begin the first of many treatments soon. Many of these treatments are not covered by insurance, and the costs will be immense. They will also be traveling periodically to seek out specialists and treatments away from home. They will leave no stone unturned.
So many have reached out and asked how you can help this amazing family. David and Voula Stanley have given their time and support so freely to so many. They are truly people with beautiful hearts. They love their two sons profoundly and would do anything for them.
The decision was made to create this fundraiser in the hopes of raising money to help relieve some of the financial burdens they will be facing as they do anything they can to defeat the odds and save their son's life. No amount is too small and funds will go directly toward helping my dear friends with medical costs and fighting ALD. This family is beyond grateful for the support and love they have been shown. Your prayers continue to give them strength to continue fighting and searching. I hope that you will share this link with your friends.
If you have questions about the diagnosis, I encourage you to visit the following sites. There is a wealth of information and can help in your understanding of what they are facing.
"Faith shows the reality of what we hope for; it is the evidence of things we cannot see."
Hebrews 11:1 NLT