Some people have asked why Stephanie has chosen to use her Sweet 16 as a fundraiser so she wanted to briefly share her story. When Steph was in 7th grade she was diagnosed with Chronic ITP, a disorder where the immune system creates an antibody that kills the platelets. Steph underwent many unpleasant treatments for 2 years, gained 57 pounds from steroids & other meds that were unsuccessful until several rounds of Chemo put her in remission where we are happy to say she has stayed in regards to her platelets since. On a routine visit to her Hemonch clinic in June of 2013 Stephanie's Immune System levels were dangerously low. From there she was diagnosed with a Primary Autoimmune Disease called CVID ( Chronic Variable Immuno Deficiency) We were told that this is what had caused the ITP and a few of the other things Stephanie is going through, including wiping out her Thyroid which remains an ongoing problem for her. There is no cure for CVID or anyway to know what the disease may do next in her body. Steph must have IVIG infusions to boost her immune system every 3 weeks that make her pretty sick and its difficult for her to keep up in school or feel like being social. Stephanie's little sister Lindsey also has a rare blood disorder called Gardner Diamond Syndrome. There is very little awareness or support for a child going through these types illnesses and Stephanie would like to help bring attention to them. She also would like to give back to the organizations who have helped her along her journey & hopes to reach out to other teens who are experiencing similar illnesses. |
Below is a description of the organizations Stephanie is raising funds and awareness for as well as a means to donate if you would like to but cannot attend. If you are attending please RSVP as per the invitation.
If you would like to help Stephanie in her charitable endeavor a check can be made directly to one of the following organizations. If you can't decide we would be happy to make the donation for you as we divide the funds appropriately. If you cannot attend but would still like to contribute, funds can be sent to 543 Chester Street, South Hempstead NY 11550 or you can donate right on this site.
Penelope's Odyssey: www.penelopesodyssey.org
An organization close to our hearts for several reasons and one our family is very involved in; Penelope's Odyssey's mission is to provide help, hope, care, kindness, and support to children and their families touched by pediatric cancer & extends events to any child with compromised immune systems. Along with running bone marrow drives to increase the amount of donors on the Bone Marrow Registry, Penelope's Odyssey hosts amazing normal childhood "Warrior" events for children in treatment or remission who have compromised immune systems in a safe, sanitary, environment that they would otherwise have to miss out on. Stephanie hopes to be able to help sponsor an event this year for other amazing Warriors.
Sunrise Day Camp www.sunrisedaycamp.org
Sunrise Day Camp provides the most wonderful day camp program for children with cancer & their siblings free of charge to the families and holds a special place in the Wettstein family's heart. Because the way Stephanie's illness is treated is so similar to that of pediatric cancer patients and she has a very compromised immune system Stephanie medically qualified to attend Sunrise this summer and was so grateful to be around other kids who are going through similar things. Stephanie hopes to be able to donate something special for the teens of the camp for next summer.
PSDA www.pdsa.org & The Jillian E Daly Foundation www.jillianedalyfoundation.org
The Platelet Disorder Association and The Jillian E. Daly Foundation are organizations committed to spreading awareness and funding research for platelet disorders and autoimmune disease. Raising awareness for rare, life threatening autoimmune diseases is extremely important to Stephanie, especially that of Pediatric Autoimmune Illness as there is very little research for these diseases. The Jillian Daly Foundation helps fund research for AutoImmune Diseases. Stephanie would like to help contribute in some small way to these
important organizations as she raises awareness as well.
|Saturday Sep 20, 2014 12:00 AM - Sunday Sep 28, 2014 12:30 AM | Free
Eat Gstropub (View)
2823 Long Beach Road
Oceanside , NY 11572
|Kid Friendly: Yes!|
|Dog Friendly: No|
|Wheelchair Accessible: Yes!|
Sep 10, 2014 2:49 PM