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Hello,
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) Child life, education and creative arts therapy. James is a 5-year-old boy with a charming personality and an infectious smile. When he was born, he was very small and struggled to efficiently grow and gain weight. When he was two years old, itwas discovered that James has two very rare disorders, which are not associated with one another. One is a genetic disorder called Floating Harbor Syndrome. There are only about 50 known cases in the world of children with this disorder. Our genetics expert, Dr. Deardorff, personally has seen this genetic disorder and also cares for another child here at CHOP with the same disorder. We also discovered that James has a late onset metabolic disorder called ASA Lyase Deficiency. It was interesting because James had screening done as a newborn, which should have flagged one of the metabolic markers, and it had not. Our team of doctors in Metabolism, and Genetics had spoken with Centers for Disease Control (CDC) and it was determined that James was the only child, ever, to have a late onset metabolic disorder that did not show an abnormality on his newborn screen. It was after this discovery that his team of physicians wrote a case study about James that was subsequently published. Our hopes are that James’ rare situation will potentially help many other children and families.
Child life specialists are uniquely trained staff that provides care and support designed to meet the specific needs of children and families as they cope with illness, injury, treatment, hospitalization and overall healthcare experience. They do all of this by providing age-appropriate and therapeutic play, art therapy, music therapy, education, pet therapy, and so much more. In all of James’ many, many hospitalizations we have used the Child Life specialists with each and every visit. They have been essential in making the hospitalization less traumatic for James, and for us. They have been able to provide support to James, and to us, his parents. The specialists have the ability to provide distraction during unpleasant or painful procedures, providing music therapy to make a bad day much better, a pet therapy dog to come by to give and receive love and affection, and a vast array and toys and crafts that make being in a hospital fun! These specialists are truly amazing and the therapies they provide for children and their families are extraordinary.
Donations made will directly benefit the Child life, education and creative arts therapy department at The Children’s Hospital of Philadelphia. Any contribution you make has the potential to truly make a positive impact on children, and their families like us.Last year, which was our first year, we had 178 people in attendance at our event and our charitable donation was $7,500. It is our mission this year, and every year, to do even better with the esteemed hope to do more good for others. This is how you can help:
- Come and enjoy our event! We are hosting a golf outing at Wedgewood Country Club in Blackwood, NJ followed by a catered reception where there will be raffle baskets and 50/50. All proceeds raised at the event will be donated to the child life, education and creative arts therapy department at the Children’s Hospital of Philadelphia.Enjoy 18 holes of golf for $120 per golfer, which includes beer during golfing as well as the reception. Registration for golf starts at 12:00 pm, with a 1:00 shotgun start. For those who wish to come to enjoy the reception, it is held at the same location at 6:00 pm and is $35.
- Basket donation! We are looking for whole baskets, or items to place into a basket that will be raffled off. If you would like to donate, please feel free to contact Linda O’Neal via email at Support@parfortheharbor.com. We will gladly pick up items that you wish to donate, or we can setup for delivery to our corporation base.
- Online donations! Monetary donations can be directly made into our donation page, on the CHOP website located at: chop.donordrive.com/campaign/jamesparfortheharbor
- Hole sponsor & table sponsor! Sponsor a hole for $100, or a table at the reception for $25. If you would like a hole and table sponsor, you can do so for $110.
- We are kindly requesting that all donations be received by July 1, 2019. Do not hesitate to contact us at support@parfortheharbor.comand we would be happy to coordinate pick up or drop off donated items.
No contribution is too small. We appreciate any and all items we receive. Your donations are tax deductible, so please find it in your heart to donate as much as possible. We appreciate your time and assistance in raising awareness of children with rare diseases/disorders and those services that are of great support to them.
Sincerely,
Thomas Agzigian (President), James Agzigian & the entire Par for the Harbor Team
Please see more of James’ story:
http://www.chop.edu/stories/individualized-medical-genetics-james-story
Our Website:
www.parfortheharbor.com
