Kate Ettingoff wrote -
Meet Kaia, our AMAZING 4 year old daughter! She's adorable right? :) If you passed her on the street or even played with her you would likely have no idea that everyday of her life she's fighting a rare and life threatening disease. The disease is an incurable autoimmune disease called dermatomyositis and she's been battling it since the summer of 2016. This disease, which for her is triggered by even normal amounts of sun exposure, attacks her skin and muscles, and if left un-checked it would continue to affect the other organs of the body, likely resulting in lifelong crippling or death. Thankfully a slew of heavy duty medicines (like weekly chemotherapy, high dose steroids, IVIG, and other daily oral medicines) keep her disease in check. BUT, they introduce a whole array of other problems that a 4 year old shouldn't have to be dealing with, throwing up from chemo actually being one of the the most annoying but ultimately least worrisome of the many side effects.
Despite being only 4 years old and all of 36 pounds, she is SUCH a trooper through all of the shots, the IVs, the visits to CHoP, and the daily stomach aches. BUT, the sunscreen multiple times a day really drives her (and her mother) insane!! The disease is triggered and exacerbated by the sun so she needs sunscreen and hats everyday of her life. In the sweltering summer heat you'll usually find her wearing a jacket over her cute t shirts and dresses to keep her arms protected from the sun and in the winter you'll wonder why that little girl's mom is smothering her in sunscreen and a sunhat. I've gotten used to the looks but it pains me that even after all of the treatments-even on an off day where she ONLY has to swallow a few pills rather than shots or IV's-she's still not allowed to forget about her disease for a single day of her life. One miniature battle I find myself fighting daily is encouraging her and those around her to NOT discourage her from going outside and playing because it means she has to put on sunscreen. It is SO important to me that she have as normal a childhood as possible! And so far, she does. She loves dance, teeball, swimming, and just playing all the time.
So how can you help you ask? :) We have two big events coming up!! This coming May will be our very first annual Walk Strong to Cure JM Philadelphia!! My husband and I started the Philadelphia chapter of Cure JM pretty immediately after she was diagonosed. And we are SO excited to finally be running our first major event and fundraiser! We have so many wonderful friends and families in the area that offer to help in any way possible, and now is the time!! Please come out and join us, share our event and our story, and where possible donate to help us find a cure! If you own or work for a company that would be interested in donating $300 or more to become a sponsor on our signs and t-shirts, please contact me!
In addition, we are getting VERY excited for KaiaFest to Cure JM!! Kaia's "Grammy", Susan Erickson is throwing a fun festival in Bissett Park on September 29th from 4-7pm to raise awareness for Cure JM in the New River Valley!! Admission is free and includes music, balloons and face painting! There will also be a food truck if you'd like to buy food! Please come out and join us, and as always, we are looking for sponsors!
As a member of the Cure JM National Leadership Counsel I am well educated and very excited about the specific research projects Cure JM is funding to help find safer treatments for our children. One of our larger projects that is working on determining the gene or genes that may cause JM is actually being done here at CHoP as we speak and all of Kaia's grandparents were thrilled to donate their blood for the project at the National Conference in DC this past weekend.
In summary....
Join us at the Inaugural Annual Philadelphia Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk!
The walk is May 4, 2019 and begins and ends at Independence National Historical Park, 143 S 3rd St, Philadelphia, PA 19106.
Registration opens 4:00 PM (on-site registration available).
Walk Festivities begin 5:00 PM.
This event is free and open to the public.
Contact simonetta.donofrio@curejm.org for more information.
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All proceeds benefit Cure JM Foundation, a 501(c)(3) nonprofit organization with the mission to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.
Through this walk Cure JM families, friends, and supporters are coming together to raise $20,000 for much-needed Juvenile Myositis research, including research Cure JM is funding right here at Children's Hospital of Philadelphia's Center for Applied Genomics.
Juvenile Myositis (JM), is a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. There are currently no FDA-approved treatments and no cure….YET!
But that’s where you come in!
Thanks to friends and family like you, Cure JM has made extraordinary progress in drug-development and genetic discovery. But, the reality is that we simply must move faster and in more areas of research than ever before and we need your support.
Every donation goes straight to Cure JM, and together Cure JM friends and families have raised over $12 million for JM research.
Can we count on you to help today?
