Gracee Faith Young

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Gracee Faith Young

20 Year Old Angel

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Hope, Faith, and Gracee


gracee (5)In an effort to raise hope and funds, as well as awareness of Juvenile
Huntington’s Disease, a 5K run and walk will be held on Saturday June 14, for Gracee Faith Young, 15.  Young was a freshman that fall and had the rare and more aggressive form of Huntington’s Disease. Her mother , Rachel, provided more details on the fundraisers and the disease. Her daughter’s journey from the first symptoms of the  disease to now have been like an emotional roller coaster for the family.
She said her daughter was born healthy and happy, with teachers praising her in pre-school for her self-confidence and social skills.
“When Gracee was in first grade, I started to notice subtle changes in her, she wasn’t as outgoing and the way she walked seemed different. She also began having terrible temper tantrums.” She also learned around that time that her daughter’s father had a genetic disease called Huntington’s Disease, along with her daughter’s grandfather.

graceeHer daughter’s uncle was also diagnosed with Juvenile Huntington’s Disease. She explained that early symptoms of the juvenile form of the disease included stiffness of the legs, clumsiness of the arms and legs, a decline in cognitive function, changes in behavior, behavioral disturbances, speech problems, and seizures. She said approximately 25 to 30 percent of juvenile cases include a tendency for epileptic seizures, which is rare in the adult form.
“The juvenile form only occurs in 5 to 10 percent of the time,” she noted.
Seven Year Journey For Diagnosis
She said she began searching the disease when her daughter was 7 years old after continuing to see ‘quirky’ changes in her sweet little girl. Although a visit to a specialist did not confirm her suspicions, she said she knew in her heart that her child had the disease. Born on Dec 29, 1998, She said it took many years and many more doctor visits, tests and misdiagnoses before she was able to get answers to why her daughter continued to decline physically, emotionally, socially, and academically. “This is already a very isolating disease,” she said. “And without answers, it was, at times, almost too much for our family to bear. But praise God, we did finally get answers.” She said that seven years after she first sought help, a neurologist agreed to have her daughter tested for the Huntington’s Disease gene.

“In August of 2012, we received the results and indeed Gracee had the HD gene.” She said the juvenice form of the disease, as well as the adult version, are both terminal, with no known treatment or cure.
“But, I will tell you the Lord told me to have Gracee prayed every day ‘I’m going to live and not die’ and proclaim the works of the Lord.” she said. “And that is the promise they held onto.”
Although most physicians have given no hope to her, she has done a considerable amount of research and is not giving up. She said her daughter followed a regimen of vitamins, along with a high-protein, high-calorie diet, as well as a new supplement recently made available to the market. Gracee was doing a lot better and were so thankful for that.”

Gracee passed away December 29, 1998 – October 21, 2019 Sweet Gracee battled a long illness, but she never complained and was always ready to give a big hug, smile and an “I love you” to everyone.  Gracee loved everyone and everyone loved her.  There was never a question of how special she was.  She touched so many hearts and lives during her short time here on Earth.  She had a special heart for all people, animals and all things outdoors.  Especially her brother who she lovingly called “Bubs” and her little sister Raleigh, who she always called “her baby”.  Anyone who met her said they’d never be the same and were made a better person by seeing the beauty she found in all.  Our hearts and lives are forever changed by the passing of our “Precious Gracee” but so thankful there’s no more suffering for our “Little Angel”.

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https://www.collinsburkefuneralhome.com/obituary/gracee-young

Team Gracee

3 Replies to “Gracee Faith Young”

  1. Very inspirational,I dont know if I would have such a cavalier and nonchalant attitude if I was
    afflicted by such a terminal disease,I would be in a state of shock,Iam not as resliant as you and the others,who really have a very scary disease like Juvenile Huntingtons Disease and I learned about HD when I was in college,I was aware of the disease’s existence,but I did not
    know it was so genetically aggressive in the way its inherited my god,Iam totally amazed
    that children diagnosed with JHD are so much more resliant than the adults who also
    inherit the disease from a historical chain of immediate relatives.

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