You know how people say your life can change in an instant?
Well believe me, it is true……………..
After a lot of discussion with doctors and specialists,
Jason and I decided that we would try the only known possible treatment option
available which was a bone marrow transplant. The doctors said at best we would
only slow down the progression of his disease and he would likely still die
before adulthood.
Peyton had an unrelated Umbilical Cord Stem Cell Transplant
on September 7, 2011. Within weeks we watched our son lose the ability to
stand, walk, sit up, swallow and talk. We have watched his oxygen supply
decrease, he has developed osteoporosis, and his feet and ankles have turned
inward to the point of not being able to even wear shoes. One day we woke up
and life was “normal” and then all of our dreams and hopes we had for our son
were shattered.
Over the last year
and a half we have had thousands of hours doing physical therapy, occupational
therapy, speech therapy, water therapy, and now our latest is Neurofeedback
therapy. Peyton has made huge improvements. He can sit up with assistance. He
is difficult to understand but he does speak. He swallows solid food ok but
requires thickened liquids to drink but requires about half of his daily
calories and liquid through a G Tube that goes directly to his stomach. Peyton
can move his legs. He can move his arms. But above all of the rest……..He can
smile at my husband and I and he can say I love you.
Today life is so much different than it was 2 years ago. Peyton is 7, Preston is almost 5 and Parker
will turn 2 in June. I would have never chosen this MLD life. But I am glad God
chose my son for me. He has taught me more about life, love and perseverance
then an entire lifetime without him would have. Like many other parents with
special needs children, we struggle every single day, but somehow we make it.
With Hope
Jessica White
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