Baby Parker's Promise

Parker Eugene Shoemaker was born on November 9, 2014.  At birth, Parker appeared to be a normal happy healthy baby and was developing normally.  At four months old, Parker started to regress and the family was sent to Children's National Medical Center in Washington, DC. The family was given the devastating diagnosis of Krabbe Disease, also known as globoid cell leukodystrophy.

Krabbe Disease is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system. There's no cure for Krabbe disease. Treatment focuses on managing the symptoms, which include painful muscle spasms, extreme irritability, seizures, and feeding difficulties.  

Stem cell transplants have shown success in infants who are treated before the onset of symptoms and in some older children and adults.  The key to successful treatment is screening for the disease at birth and completing the stem cell transplant prior to the onset of symptoms.  A stem cell transplant is not an option for Parker since his symptoms are advanced.

Currently only a handful of States screen for Krabbe disease at birth, which would be screened along with five other disorders called Lysosomal Storage Disorders (LSDs) - Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome.  Many legislators are unaware that these diseases exist, the severity of the diseases or the treatments options available if caught early.

Please help us raise funds to help support the family in their desperate time of need and to help bring awareness to this very rare, but very deadly disease.