BENEFITING: Cardio Facio Cutaneous International Inc
Hi, my name is John Kyle, and I had a very special niece, Charlie Michele Buford, who left this world on Wednesday, June 25th, 2014. She was 6 years and 2 months young. She had an extremely rare set of conditions: Cardiofaciocutaneous (CFC) syndrome, coupled with Lymphedema.
As of March 2014, Only about 200 or so cases of CFC had been diagnosed worldwide, so you can imagine the challenges my sister Teresa faced when doctors were consistently befuddled for the first 20 months of Charlie's life. Now, I can go on and on about how my sister and brother-in-law (Charles) have overcome the obstacles of finding healthcare coverage for such a little-known condition, but that's not the reason for my efforts here.
Teresa and Charles do not know of my fundraising efforts today, but what I would LOVE to help them do is establish and grow a foundation to actively help families who face similar struggles in their lives, as I cannot begin to fathom what it must feel like to have an infant child diagnosed with a grave, potentially terminal illness.
For a good cry, and to learn more about the journey Charlie and my sister's family has undertaken, please visit www.charliebuford.com. Their words will provide you with a much more profound understanding of how wonderfully they appreciated their all-too-short life with Charlie. If you feel that this information moves you to donate to Charlie Buford's Legacy, please do not hesitate, as I can't wait to show Teresa and Charles that Charlie's impact lives eternally.
Thank you so much for your thoughts and consideration,
John Edward Kyle.