Michael Warechowski IV

Updates on our sweet Michael

Michael’s story

on September 10, 2014
The MLD foundation has asked for help in spreading the word about MLD. They asked us to write a short story about Michael’s diagnosis – from then until now. Here is what I wrote.Michael was a perfectly healthy, smart and funny little boy. At 20 months, he was already saying his ABC’s and counting to 20. He was typical by most standards. Except….he couldn’t walk. We began wondering about Michael around 16 months but the doctors just said he was a “late walker.”Well, when his 2nd birthday approached, we knew something wasn’t right. After months of testing, a brain MRI and urine test confirmed that Michael had MLD – Metachromatic Leukodystrophy. Shortly after his diagnosis weheaded up to Pittsburgh, PA to see the world’s most knowledgeable doctor aboutMLD, Maria Escolar. She warned us that this disease progresses very fast, especially in the beginning. We had no idea how fast she meant but we soon found out.

We received Michael’s diagnosis on March 27th,2012. At that point he could still do everything except walk unassisted. By September of 2012, only 6 months later, Michael had lost all of his abilities.He could no longer sit up, hold his head up, talk or eat by mouth. He was very uncomfortable most of the time, whimpering, vomiting, sweating and crying everyday. We didn’t know how to get him comfortable and he couldn’t communicate with us. We spent a few months trying to figure out what medications would make Michael comfortable. A second and third trip up to Pittsburgh got us on track and we finally got Michael on the right medications and dosages. He was finally comfortable by the spring of 2013.

The first year after Michael’s diagnosis was the hardest year of our lives. To see your only child go from being able to carry on a conversation with you, being able to laugh and play to not being able to do anything…and even worse, to be in constant pain was hard, to say the least.

We now at 2 years post diagnosis and life is different now. Michael is stable. We have a routine. He is comfortable although, he does have some bad days. We have had a few scares, some trips to the emergency room and 2 emergency brain surgeries. But Michael is stronger than any human I have ever seen. He handles everything with such calm gracefulness. Despite everything he has been through, he still manages to smile sometimes. He still shows us love through his eyes. He has taught us strength, patience and understanding. He brings us indescribable amounts of joy. We play and interact in our own ways. We still have fun and even though Michael can’t communicate, he is very much alive inside. He is just trapped in this body that doesn’t work. He likes to be stimulated – read and talked to, held and loved on. So we spend the majority of our days doing just that – loving on him, talking to him and cherishing the fact that we have him.



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