We have created this page to share our story and keep everyone updated on our journey. We also hope to raise awareness for Metachromatic Leukodystrophy. Please take a moment to read our story. and stay updated on our journey. We have set up a medical fund for Michael so if you’d like to make a donation, simply click on “Donate.” We appreciate your love and support.
Most people get a lifetime with their children. Not us. Not any of the parents of late infantile onset MLD children. Metachromatic Leukodystrophy is quite severe, progressive and fatal. Most children live to age 5, some to age 10. Michael will end up needing constant care as he begins to deteriorate, losing his ability to sit up, crawl, eat, see, hear and eventually, breathe. The only treatment for this disorder is a bone marrow, stem cell or cord blood transplant. Unfortunately, transplant is not generally recommended for late infantile onset of MLD so the we have decided not to put Michael through transplant but rather, to keep him at home where he is happy and we can share him with everyone who loves him.
Michael is one of the sweetest little boys you will ever meet – everyone who meets him agrees. Those who are closest to him will tell you that he is more snuggly than any child you’ve ever met. He loves his little “babies” as we call them – his little stuffed animals that he hugs while he sleeps and insists on carrying around with him everywhere he goes. Michael was a perfectly healthy, normal baby for most of his life. He reached most of his milestones right on target – rolled over at 4 months, sat up at 6 months, crawled at 8 months and began talking at 10 months. In fact, his speech seemed to be above average as he was saying sentences as early as 16 months. He learned his colors and shapes around 18 months and he now counts all the way to 20 (“Count to 20, holy cow” as Michael would say). When Michael finally decided to stand up and try to walk, Katie and Mike noticed that his feet looked a little funny so they began with a series of doctor’s appointments including the Chiropractor, Pediatrician, Orthopedist and finally, Neurologist. The neurologist ordered an MRI and when they found something questionable in his brain, they ordered some blood work. Our worst nightmare came true when they received the results from the blood tests.
On Tuesday March 27th, (Katie’s birthday), we found out Michael’s diagnosis – M….L….D
You can read more about this terrible disorder by clicking here.