James' Par for the Harbor

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June 8th, 2024

Gregory's Restaurant and Bar 900 Shore Road Somers Point NJ 08244

11:30 am - 4:00 pm 

Thank you for this opportunity to tell you about a truly extraordinary little boy, and about a chance to participate in an incredible fundraiser for children, and their families, involved with The Children’s Hospital of Philadelphia (CHOP). 

When James was two years old, it was discovered he has two very rare disorders. One is a genetic disorder called Floating Harbor Syndrome. Children with this syndrome have significant developmental and cognitive delays, speech delay in which most children have little verbalization and use talking devices, such as James does. They also have difficulties with eating by mouth and require a feeding tube, as James does as well. There are only about 100 known cases in the world of children with this disorder. The second is a metabolic disorder called ASA Lyase Deficiency, in which James’ body is unable to efficiently break down protein requiring a specialized diet. James’ situation is so rare that his doctors have published a case study about him to provide education and guidance for other medical providers. 

This organization was started by James’ family with the hopes to help other families going through similar situations. Donations received will be directly placed into a fund at CHOP to be utilized by the department of Metabolism. Through this fund, families will be able to receive financial support for necessary medical supplies that are not otherwise covered by insurances. Children, like James, with rare disorders often require a specialized medication regimen and diet which is often expensive and not a covered benefit with most insurances. Families struggle to provide their children with what they medically and nutritionally need, which can be agony. We want to help other children with rare disorders, and their families, to thrive.

https://parfortheharbor.com/index.html

https://www.chop.edu/stories/individualized-medical-genetics-james-story