Matthew, our SuperHero

Matthew was born on January 2005 a sweet healthy baby boy. For his first three years of his life he grew and acted the same as would be expected.

One day, Matthew was playing with his sister and cousins he hit his head and was unresponsive.

We rushed him to the hospital. Few days later after much testing, the news got worse. The doctors informed us Matthew has Leukodystrophy . That was December 2007. We had no idea what this was or what to expect.

When we read what this disease did to children it was devastating no cure. No treatment. Life expectancy very short. Matthew the fighter that he is began to walk again with a walker, braces and a soft helmet.

In January 2008, after genetic testing with Dr. Ralph Schiffmann we found out Matthew has leukodystrophy known as Vanishing White Matter Disease (VWM).

Matthew began to loose his abilities: first his walking, and shortly after eating became difficult for him, his ability to talk soon was gone.

This was the most difficult time for us, watching our son deteriorate. Trying to feed him with no results ,seeing him go from eating normally to barely sucking through a straw and Matthew trying to communicate that he can’t do it anymore.

From age 5 until present day. Matthew suffers from severe scoliosis that affects his breathing that leads to him having to wear the ventilator with oxygen it helps to expand his lungs.

Due to Matthew’s bone loss his bones have become very brittle that has caused him to have a dislocated hip. Matthew experiences a collage of ups and downs. He has slipped into a coma in which the doctors said we would not survive, he did.

Matthew has been hospitalized several occasions where the doctors had written him off, yet he survived

Our family was on a retreat when Matthew became seriously ill. He was taken to a local hospital where he was intubated and air lifted to Mott Children’s Hospital where he was on life support for two months with no chance of survival.

He is still here. Matthew is a hero and a miracle and is very much loved by all who come in contact with him. We will never give up fighting for him as he grows older. Gods will be done in all things.

Written by Matthew’s mom.

Do what you can, spread leukodystrophy awareness…follow Matthew’s journey on facebook:

Your donations will fund the science that saves the lives of children like Matthew. It would be amazing if we could reach $2,600,000. Even if it’s a small amount, please consider donating:

  3. By check to : AFTAU
    39 Broadway, Suite 1510
    New York, NY 10006
    Attn: Joe Huber/Orna VWM research

***Note: All 4 ways above go directly to Prof. Orna Elroy-Stein VWM research ****

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