For Drake’s Sake

Drake was diagnosed with a rare genetic disorder called Hurler Syndrome shortly after birth. Hurler is a form of mucopolysaccharidosis or MPS 1, and only occurs once in every 100,000 live births. Simply put, he lacks an enzyme that breaks down large sugar molecules that build up all over the body. Hurler Syndrome is a progressive disorder that affects nearly every system of the body, most notably; the brain, bones, heart, liver, spleen, eyes, and ears...leading to short stature, facial abnormalities, and a lifespan less than 10 years without treatment.

There is no cure for Hurler Syndrome, and current treatment includes: Bone Marrow Transplant (BMT) and Enzyme Replacement Therapy (ERT). The BMT lessens the symptoms and slows the progress. Basically, the donated cells take over and make the enzyme that is missing. ERT replaces the enzyme that is missing, but unfortunately this form of treatment does not cross the blood brain barrier, therefore it does not treat the brain.

We are lucky enough to live in a state that screens for this disease on newborn screening tests. Otherwise, Hurler is usually not diagnosed until 6-8 months or later when quite a bit of damage has already been done. The earlier a patient is transplanted, the better outcome. Drake will have a bone marrow transplant when he is about 3 months old.

We will do our best to keep everyone updated on Drake’s progress through this page and others. There will likely be a benefit (or two) in the coming months and we will let you know as soon as the details come together.

Several of you have already asked about ways to help and while we don’t know our needs just yet, we expect to in the near future. So, please feel free to watch this page as various ways to help will be announced. Thank you!