This past Monday we took Joel to his first fundraiser. It was a dinner to raise money for Ring 14 USA, an outreach organization stated by our dear friend Yssa and 5 other parents whose children have Ring14. Ring14 is a very rare genetic disorder caused by a mutation of the 14th chromosome. The ends of the chromosome fuse together, doming a ring structure - hence the name, "Ring14". Genetic material is often lost from this mutation. Symptoms of Ring14 can vary, but they are usually extreme and frequently include: severe drug-resistant epilepsy, immune deficiencies, learning disabilities, limited language skills, scoliosis, digestive problems, low muscle tone, slow growth and limited motor skills.
Here is our friend Marie (far left) meeting Joel. Marie was diagnosed with Ring14 when she was a baby, she is now an adorable, loving, 7 year old. She has taught all who meet her to smile often and love unconditionally. She loves to touch baby Joel's hands and feet and show him her toys. We spend time as a family praying for Marie, and her big sisters, and her fantastic parents. They have grown to be dear dear friends of ours over the past three years. Yssa is one of the women I look up to and find encouragement from as a mother and a Christian.
The dinner was a great success and really fun. The meal was provided by another friend from the community and everything was DELICIOUS! In addition to this being Joel's first charity it was also his first auction. There was a silent and a live auction. It was fun to listen to the auctioneer. I had never been to a real auction before. Phil and I bid on and won some Boilermaker Coffee from KitchenArt and he got a tie tack, something he's been wanting for months.
If you are interested in learning more about this organization you can visit them online at ring14usa.org. Due to its rarity and severity, Ring14 is considered an orphan disease, meaning that, although the need is great, it is not cost effective to find treatments. Thus, most research must be exclusively financed through private donations. Donations of time and money are always being accepted to fund research and outreach and ultimately help kids like Marie.