Win/Win for Rare Disease Children with Heart Disease

I am just returning from what was the vacation of a lifetime. My husband and I, along with 6 others spent a full week in a villa in Bali! I do not share this out of conceit or to brag, but because the villa was a direct result of a silent auction benefiting an amazing camp for kids with a specific condition, caused often by rare diseases. In April of 2022, there was Gala del Sol in Southern California, benefiting Camp del Corazon. It was a direct result of this, that I got an experience of a lifetime, but that is not what this is about - this is about the experience that these children have and the opportunities given to them because of the volunteers, donations and hard work of people who make this happen each year.

Camp del Corazon Inc is a 501c3 that provides a free of charge summer camp for children with heart disease. As, I have stated many times before children with any rare disease have a different experience growing up and summer camp is no different. Imagine sending a child with severe heart disease, requiring 24 hour care to a summer camp that offers everything a traditional camp setting would offer. Camp del Corazon lets children sleep in a cabin, go on nature hikes, go rock climbing, arts and crafts, and other recreational activities that typically healthy children would enjoy at camp.

How do these parents send their children to Camp? First of all, camp is free to attend, thanks to the fundraising and donations. Because of the large medical expenses of the illness Camp del Corazon works hard to ensure that this experience does not add to the financial burden of those who attend camp. Secondly, the tremendous volunteer staff at each camp is highly qualified to care for these children - most of whom cannot go on a typical family vacation due to the amount of constant medical care needed. Many of these children are medically fragile and have had multiple surgeries and procedures - this camp is one of the only places that their parents would feel safe allowing them to be without them.

Camp del Corazon has served about 300 campers aged 7-17 each year since 1995. Just think of the number of lives changed!! This opportunity gives these children a week to feel like typical kids - it does not take away the medical complexities, but allows them to live a full life for one week a year despite them. It allows parents a bit of a break for that week, not that they are not worried while their kids are gone, but for that week they know that their children are living their best lives with other kids in similar situations while receiving top-notch medical care.

So, while the gala may have provided me with the trip of a lifetime,Camp del Corazon gives these families an opportunity to live for one week without the medical worries that most of their life is burdened with. The hearts of the staff, the volunteers and the organization that makes this possible for kids and their families is invaluable to those they are serving.

For more information, or to donate to Camp del Corazon - https://www.campdelcorazon.org/