In December 2017, sweet Henry was diagnosed with Hurler Syndrome, Mucopolysaccharidosis Type 1 (MPS1). There is no cure. Life expectancy is early childhood.
Hurler Syndrome is a rare genetic metabolic disorder where the body cannot make an important enzyme called alpha-L iduronidase, which is needed to break down sugars. These sugars build up in cells and cause damage throughout tissues and organs in the body. People who have this disease can have problems with how their bodies grow and work, as well as trouble with thinking and learning. Multiple body systems are affected.
So far in this journey, Henry has seen multiple specialists. At the young age of 2, he has endured several surgeries, physical therapy, occupational therapy, a sleep study, breathing treatments and many diagnostic tests.
Henry's doctors and medical team are moving quickly towards aggressive treatments that will help better manage MPS 1 and slow the damaging effects. Kate and Corey will be traveling 2 hours from their home in Indiana for his treatment at Cincinnati Children’s Hospital.
This week Henry will begin receiving Aldurazyme enzyme replacement therapy (ERT) infusions, which comes with a hefty price tag. He will need ERT weekly. A bone marrow transplant is also in the foreseeable future.
Kate and Corey are ready to give Henry the best care and the best possible outcome with this new diagnosis, but it comes with astronomical medical expenses from bone marrow transplant, co-pays, ERT, travel expenses, therapies, etc.
Please join us as we help Kate and Corey tackle this financially and lighten this burden so that they can focus on Henry's care as well as caring for Jack, their oldest son.
To read more follow Henry's journey .
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