Team Dean: Warriors of Hope

For: David and Voula Stanley
Friendswood, TX
Organizer: Jennifer Arcangeli
Team Dean: Warriors of Hope (David and Voula Stanley)
$40,643
of $40,000 goal
100% Complete
Raised by 337 donors

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 January 29, 2018

UpdateImage

Posted on January 29, 2018

On January 21st, Heaven gained the most beautiful angel. Dean was only diagnosed on September 28th, but the form of Cerebral ALD he had was incredibly aggressive.  To say Dean was an amazing child is a great understatement. Dean loved to laugh, tell jokes, draw, create and discover things, and loved being outside. It is immensely difficult coping with the reality of his  physical absence in our lives. His family's life will never be the same. Through this experience Dean has given a gift to so many. He has taught so many of us grace, brought people together, and created a network of love and prayer among so many.

It is our hope, that through Dean's story, awareness can be raised of this horrific disease. More research needs to be done to search for a cure. More states need to adopt genetic newborn screening so that lives can be saved. No parent should have to witness their child suffer through the stages of this disease and say goodbye to their child. I hope that we can all make a difference to raise awareness about ALD, educate ourselves about ALD, and support research. I hope you will reach out to lawmakers in an effort to fight for genetic newborn screening, because without it we do not know of ALD's presence until it is too late. Thank you to all who donated to Dean's cause... we are forever grateful. 

Dean, we will miss you beyond words. Thank you for the gift of knowing you.

If you are moved to do so, you can follow this link, http://www.aldfoundation.org/awareness.php. Through this site, you can click on provided links to obtain the names and addresses of your representatives in Washington, print the letter (available in .pdf and .doc format below), sign it, and mail it in. I hope you will let them hear your voice so that change can be made. 

Information can also be found at http://www.stopald.org/. The Stop ALD Foundation focuses on accelerating the process of developing new knowledge and new therapies for adrenoleukodystrophy (ALD), and works to accelerate implementation of newborn screening for ALD. 

When my heart is overwhelmed, lead me to the rock that is higher than I. - Psalm 61:2


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.    

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