About Claire

Claire Giles Crittenden was born March 25, 2003, a healthy 8 pound 7 ounce girl. When she was 6-8 months old she began to drop in her weight gain and eventually fell into the 5th Percentile and below. Most doctors were not concerned and just called her petite. She developed normally for such a small girl until around the age of two she began to have difficulty getting off the floor. Dr. Pamela Chivers, of Christie Pediatric Group, was concerned enough to send her to a Neurologist and an MRI. The MRI was normal and Dr. Blouin, the Neurologist, diagnosed her with Hypotonia. We then began seeing a series of doctors to find out why she was not growing (GI, Endocrinology, Genetics), the tests seemed endless and all were inconclusive. We also began Physical Therapy to try and increase her strength. Later her eyes began to "shake" and her right eye turned in, another doctor and glasses. Then in January of 2007 she began to tremor in both her hands, so bad that she could not feed herself, and she began to fall a lot. Her balance was terribly off. We returned to Dr. Blouin and repeated the MRI. Unfortunately this one was not normal and showed white spots on her Brain Stem and Cerebellum. Dr. Blouin stated the findings were consistent with Leigh’s Disease. He then made us an appointment with Dr. John Shoffner, a leading researcher in Mitochondrial Disease, in Atlanta, Ga. This was in June of 2007 and he ordered a Muscle Biopsy, blood tests and a repeat spinal tap. He felt sure this was Leigh’s even without the confirmation that the tests gave us. Claire went from using a walker to wheelchair dependency in 3 months and stopped eating in September 2007 at which time we had a tube placed in her tummy to feed her with. She seemed to do much better for a few months in getting nutrition and all the supplements she was placed on. In February 2008 she began vomiting whenever she was fed and placed on home IV fluids. For the last week she has been keeping food down but is very weak. We opted to have Hospice come in to manage her care and I have taken a leave of absence from work to care for her at home. The days I have spent with her are absolutely priceless to me. Throughout it all she has retained her cognitive status and is a bright and beautiful girl. God has given me a true honor to care for one of His Angels on Earth and I only hope I am doing the best job that I can. Claire has been through so much during her short life but is such a little trooper who loves Hannah Montana and her family.

Sadly Claire passed away at her home on April 25, 2008. This camp is her legacy and we know we will see her again one day in Heaven!

Thank You for your support of "The Claire Giles Crittenden Foundation" and "Claire’s Camp."

To Donate to Claire's Camp

If you wish to donate to Claire's Camp, please make a check payable to the "Claire Giles Crittenden Foundation" and send to 2605 Hwy 153, Piedmont, SC 29673. This donation will be used to brighten the stay for a chronically ill child and their family. We appreciate your generosity. Without donors like you, Claire's Camp would not be possible.