This post is part of #GivingTuesday's #WomenWhoGive series, which celebrates women who are making a difference in their communities.
Caryl Harris, Founder and Executive Director, Avery's Hope
My name is Caryl Harris and I am the Founder and Executive Director of Avery's Hope. Avery's Hope is a 501c3 organization that raises money and awareness of children living with rare gastrointestinal disease and their families who face the financial hurdles of having children "living rare."
My grandson, Avery, was born rare. Avery was diagnosed with Microvillus Inclusion Disease (MID) three months after birth. His disease means that he does not absorb much nutrition from food and has to be fed through a central line, a broviac. He does absorb some nutrition from food and is also fed through a feeding tube. With this type of diagnosis, the fact that he can absorb any nutrition is also considered very rare. It took 3 months and 3 hospitals for Avery to be diagnosed correctly. Once the team at Children's Hospital of Philadelphia got involved, Avery was able to start living life. I was inspired by his team of doctors, nurses, and staff at CHOP that I decided I wanted to do something to give back, to say thank you for saving Avery's life and also giving him a fairly normal childhood.
With my husband, Eric, and a team of friends, we started Avery's Hope (averys-hope.org). Avery's Hope joined with Children's Hospital of Philadelphia and created the HOPE Fund for the Division of Gastroenterology, Hepatology and Nutrition with a 5 year financial commitment to the families and patients. We also established our relationship with the Children's Hospital of Pittsburgh's Acacia Puleo Small Bowel/Liver Transplant Patient Assistance Fund by making our first of many donations to this program.
Advocacy and raising awareness for those living with rare diseases has become a mission and purpose. It is important that we educate and share and raise awareness so that those living rare are not left to suffer in silence, not receive the necessary medications, treatments and tests, and be the important part of society we are all meant to be. In honor of Rare Disease Day, I spent a few days at the Rare Disease Week on Capitol Hill Conference and lobbied for research dollars for the rare community and access to medications and treatments that are affordable and accepted by insurance. I hope that one day, every new human being will haven genetic testing so that there is never a wait time between symptoms to diagnosis to treatment. I will continue to work on giving back to the rare community for as long as there are such huge gaps in care, funding, treatment and the like.
If you want to give back in any way, I would say that you don't have to go big. Start small and give your time, collect food, toiletries, or participate in a charity event. It may seem small, but it isn't. By participating in any way you are letting the world know that your cause matters.
Although Avery's Hope raises money, there are times that money is not what people need. Around the holidays, we collected a huge amount of toiletries that we donated to the families who were spending time in the hospital with their beautiful and beautifully rare children. There was shampoos and body lotions and soaps that didn't smell medicinal. When packing for a hospital trip, most parents forget about themselves. We wanted to make their hospital stay just a little bit more comfortable.
Thank you for letting me tell my story and I hope that if anyone is interested in giving back in any way, please go with your gut and follow your heart.