Team Dean: Warriors of Hope

For: David and Voula Stanley
Friendswood, TX
Organizer: Jennifer Arcangeli
Team Dean: Warriors of Hope (David and Voula Stanley)
$34,152
of $40,000 goal.
Raised by 285 donors
85% Complete

The Story

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.

  • http://aldconnect.org/
  • http://www.stopald.org/

"Faith shows the reality of what we hope for; it is the evidence of things we cannot see."

Hebrews 11:1 NLT

Fundraiser Updates

Posted on November 16, 2017

UpdateImage

Posted on November 16, 2017

By David Stanley-

Dean!  What a beautiful, handsome, and sweet boy. You couldn’t have asked for a more perfect child. God made him exactly who he is, stitched every piece and planned Dean’s future to be perfect in His eyes. This boy is such a shining light and he knows Jesus loves him, for which we can take peace in. The plan this year is to celebrate an early Christmas since, just like every little boy and girl, it’s his favorite time of the year. Dean is now blind in one eye and has about 20% vision remaining in the other so time is of the essence. He still has hearing but has trouble distinguishing where it’s coming from and even processing what was said. So keeping things simple and routine are important. Fortunately prior to his sickness he was very much into routines and can still manage quite a few normal tasks on his own. But this loss of senses has caused Dean to have pretty bad anxiety and that’s the main hurdle right now. If you are praying, then pray for peace and calm for Dean. This picture was taken on Dean’s golf cart! If you know Dean well then you know he LOVES to ride his bike. He can longer do that, but still yearns to be out in the open wind. So, getting a golf cart seemed like the best possible way to get him outside and this turned out to be an amazing way to help rein in his anxiety..even if only temporarily. 


Posted on November 5, 2017

UpdateImage

Posted on November 5, 2017

The family has just returned from Greece. For those of you following Dean's story and do not know the Stanley's personally, I want to provide some background. Voula's side of the family is from Greece. Her parents came to the U.S. after they married and made a beautiful life for their amazing family. From the day Voula had her children, she dreamed of taking them to Greece. She wanted her children to meet her family there, see their history, and have them experience what she did as a child. However, as life always got in the way (as it tends to do), this trip had continued to be put off for another time. When it became apparent that Dean's vision was failing quickly, they made a decision to go to Greece. Voula could not bear the thought of losing the opportunity to have this trip with her two boys. They quickly planned an international trip within a matter of days. Dean had some difficult days there, but he also had some wonderful ones. They made some unforgettable memories and experienced great beauty together. Dean was able to see the ocean and play in the sand. They even went to a pink sand beach. This trip holds a vast amount of meaning for them. They are taking life one day at a time and soaking up all they can. I have posted some pictures of their trip in the gallery.    


Posted on October 21, 2017

UpdateImage

Posted on October 21, 2017

By David Stanley-

(Pic taken during trip to see Dr. Lund in Minnesota)

Had a down day from tests and scans so we took the boys to Mall of America’s!  They loved it for the most part. The crowds of people and noises in the place caused him some panic at times but the freedom he got to experience on this swing was his highlight indeed. I show him the videos and pictures from this and he always gets a big smile on his face and says how his brother was so scared. We’ve learned that he says “my brother thinks ___ or my brother says ___”. It’s actually him that’s thinking these things. So it’s awesome to hear him speak his conscience and know what he’s feeling inside. Lord we ask for healing but most of all we ask for peace in him. We ask you to take any pain away. Keep him from knowing or being aware as this sickness takes his eyesight and hearing. Bless him Lord with your everlasting spirit. Be with him Lord God. Amen 🙏

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