The Dylan Samuel Freeman Story

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OUR HERO - 11/20/1996 - 4/30/2004

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Dylan Samuel Freeman


Welcome To My Home Page!!!!!  My name is Dylan was 7 years old. He was diagnosed with Alexander's Disease at age 4.  The purpose of his web site is to help educate as many people as possible about this rare known disease and hopefully raise funds for research, for a treatment or cure. Maybe the research can't help Dylan. but please continue to donate, so Dylan's friends can be saved

Dylan Samuel Freeman

November 20th 1996 ---- April 30th 2004


With Heavy Hearts Sam and Kathy want to let everyone know that DYLAN became an ANGEL at 1:34am on April 30 2004. We would like to thank everyone for their thoughts & prayers. 

Everyone who meets him out on the town calls him HOLLYWOOD; since he insists on wearing his sunglasses to protect his Beautiful Blue Eyes. Everyone he meets falls in love with him at first sight. He is so polite with his "Hi's, Pleases, and Thank you's". He never wants to see anyone upset and he tries to keep everyone around him happy. His beautiful smile will win your heart the minute you lay eyes on him.

Dylan (7) will be home schooled till he is strong enough to go to regular school.. Dylan and his sister Ashley (12) love to play together, while he loves to play video games with his brother Austin (10). He is a real animal lover and enjoys playing with his dog, Dakota & his cats Symba & Blu. His favorite TV shows consist of Rugrats, Barney, Hey Arnold, Blues Clues & He loved the movie Monsters Inc & watches it at least 5 times a day.His times out on the town, Lakeland, Fl, involve socializing at church, restraunts, Publix supermarkets and Explorations V, a local children's museum. As we ride around town, he tells us which way to go and points out the locations of every restaurant he's been to, since eating was his favorite thing to do.Dylan now has a GTube & cannot have anything by mouth or he will asperate it.
Dylan Samuel Freeman, son of Sam and Kathy Freeman, was born on November 20th, 1996 in Brandon, Fl. At the age of 18 months, we noticed that he was having trouble with his balance, but he finally learned to walk at age 2. His doctor mentioned the possibility of mild Cerebral Palsy and said he would probably grow out of it. As it became more noticeable in his speech, we took him to another Neurologist in January 2001 at age 4. He had an MRI done and the doctor dianosed Alexander Disease and advised us to get a second opinion, since this was something that he had only read about at Harvard, but had never seen before.

Dylan started seeing a Neurologist in Tampa who said he had never seen this type of condition in his 25 years of practice but has dealt with other forms of Leukodystrophies. He felt that it was probably another form, since Alexander's is the rarest of the 10 named Leukodystrophies. However, in January 2001, a DNA test was developed since they finally discovered the gene (GFAP) that they believe is the culprit. Dylan had blood taken at Watson Clinic and was such a Big Boy! He didn't shed a tear. Mommy and Daddy were so proud! But to everyone's suprise, the blood samples sent to Washington DC came back positive for Alexander Disease. Since the DNA test was developed in January, the doctor in Baltimore, Maryland told us that Dylan was the third child diagnosed this year.But at the United Leukodystrophy Foundation conference in July 2001, we learned of 40 new cases being diagnosed with the DNA test. This with the 60 known cases in all the literature makes Dylan 1 of the first 100 with a definite diagnosis. And there are more cases being diagnosed everyday.Alexander Disease belongs to a group of progressive neurological disorders, which cause destruction of white matter in the brain (Myelin). The majority of cases of Alexander's are sporadic; that is without a known family history of the disorder. There are, however, a number of families with more than one affected child. The United Leukodystrophy Foundation said in an interview to our local newspaper that " Those who develope Alexander's in infancy usually don't survive past age 6". It is quickly progressive and is the rarest of the identified Leukodystophies with only 60 known cases in the world!

The UNITED LEUKODYSTROPHY FOUNDATION (ULF) is the world's finest and most effective "orphan disease" organization serving 2,500 families, 1,500 scientists and professionals in every state and over 50 countries.
Dylan's friends and family encourage you to help us fund research for treatment and a possible cure for this tragic disease. Please specify contributions to go to research of Alexander's Disease and others if you wish , in honor of Dylan Freeman. Also we have set up a fund at a local church, Trinity Baptist Church,6635 Old Hwy 37,Lakeland, Fl, 33811. With your support and Gods help we CAN change the predicted outcome for Dylan and all the other children with Alexander's and other diseases of the central nervous system. Thank You for your support !!!!

If you would like to make a donation you can either copy & paste the information below to your email or send us an email at the link under the winnie the pooh picture & we will send it too you, so you can print it. Thank you so much!
____Please give this donation to the research of Alexander's Disease in honor of Dylan Freeman
____Please send additional information on Alexander's Disease
____Please give this donation to the ULF Endowment Fund for Research
____Please give this donation to the ULF Endowment Fund

Make checks payable to:
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore,Illinois 60178

____Please bill my ___Mastercard____Visa____Other
In the amount of
Card Number_______________________Expiration________

your contribution is tax deductable and will be gratefully acknowledged by the Foundation
(Tax ID# 35-1557361)
Thank You !!!!!!


You may also donate to Dylan Freeman's FriendsSpecial Needs Fund.  This money was used to purchase his wheelchair and other needs that he had. You may send your tax deductable contribution to....TRINITY BAPTIST CHURCH 6635 OLD HWY 37, LAKELAND, FL 33811.  For more info please call...863-709-1009

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