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Dear Family Friends,
I am excited to announce that I am dancing at the 2017 Rutgers University Dance Marathon to raise funds and awareness for Embrace Kids Foundation which supports children with cancer, blood disorders and other serious health challenges
I am a twenty year old who was diagnosed with three life threatening illnesses. Pten Hamartoma Tumor Syndrome which is a cancer predisposition syndrome that causes up to an eighty five percent chance of cancer. This is an extremely rare disease only one in two hundred thousand people have the disease. I also have over eleven arteriovascular malformations with hamartomas surrounding them as well as Long QT Syndrome which is a heart condition that complicates every single treatment for all of my over twenty other comorbities. These diseases put me in the hospital anywhere from forty to ninety days a year .I go through numerous surgeries, procedures, and cancer screenings every year.When I was sixteen years old I went on rapamune which is a preventative chemotherapy/immunosuppressent to decrease my chance of cancer and treat my hamartomas. I am treated at the Cancer Institute of New Jersey which is in a partnership with the Embrace Kids Foundation. The foundation hosts parties multiple times a year with activities related to the holiday that they are celebrating for example the Halloween party has trick or treating, dress up, and Halloween related crafts. They do this to help give back some the parts of childhood that children miss out on because of their illness by making the parties tottally accessible to all of the children in the foundation by having them in the hospital, having clear paths for wheelchairs and not allowing anyone with a contagious illness into any of their parties so that the children with low immune systems do not have to wear masks to the parties.Another one of their programs is the RU4Kids Program which is when patient familes are paired with student organizations at Rutgers. I am paired with Omega Phi Alpha they visit me in the hospital, go to lunch with me before my clinic appointments, and go to all of the Embrace Kids events with me. They inducted me into the sorority as an honorary member, gave me my own set of letters, and privelleges and invitations to future sorority events. The members of the sorority text me all of the time knowing that I am always on my phone just like any other teenager. Last year I went to dance marathon with my sorority for the first time. The patient families usually come for three hours at the end of the marathon . I wanted to spend as much time with my sorority as possible so I went for six hours. It was so much fun getting to dance, bounce a beach ball, and spin around in my wheelchair with everyone. That is why I am so excited to be able to help this year.
Founded in 1991, Embrace Kids provides over $1.6 million in programs and services to children and families throughout the greater New Jersey area, at absolutely no cost to the family. These support services address the families’ needs as a whole including social services, counseling, financial assistance, health education, inspirational events and more.
You can help make a difference by making a tax-deductible donation on my fundraising page. No gift is too small.
It is faster and easier than ever to support this great cause by making your donation online using the link on this page.
Whatever you can give will help - it all adds up! Thank you so much for your support!
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