This is an article about a man with fragile X syndrome. A lot of adults with fragile X are still undiagnosed because fragile X was realized, and tests perfected, after most were already grown. So it is rare to get a portrait of a fxs man.
I have a cousin who is in his 40′s with fragile X. For years we all thought his mental disability came from his mother having Rh blood. After Matthew was found to have fxs we noticed a lot of similarities in the two. My aunt decided to have her son tested and it had been fragile x all along! If it wasn’t for my son she still wouldn’t know.
Anyhow, here is the story:
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For a good cause
BURLEY, IDAHO - It is often said that “attitude is everything.” But can attitude bring about miracles?
For Rdean Day of Burley, every day is a miracle. Rdean was diagnosed at an early age with a mental disability, which later was determined to be due to a genetic condition called Fragile X Syndrome.
According to the National Fragile X Foundation, the disorder is the most common inherited cause of mental impairment occurring in about 1 in 3,600 males and 1 in 4,000 to 6,000 females. For Donald and Ella Day, the odds were slightly higher. Of their four sons, only one was not affected by the disorder.
“It’s been hard at times,” said Donald Day. “But I wouldn’t trade this life or those boys for anything in the world.”
The family lived in Burley until 1976 when it became apparent they would need help caring for the special needs of the three boys.
They moved to Utah and placed the boys in a care facility, visiting several times a week and taking the boys for outings.
When Rdean was 16, his family took him out of the center. He had learned additional skills at the center and, because his disability was less severe than his brothers, he was able to return home.
Although Rdean’s mental capabilities were stronger than his brothers, his physical body was not. He had been born with gastroesophageal reflux disease, or GERD, that had worn away his esophagus. The stomach acid wore away his teeth, and aspiration of stomach acid also contributed to numerous bouts of pneumonia.
In 1992 he developed hemolytic anemia, a condition of not having enough red blood cells. He had double pneumonia in both lungs and had to have his spleen removed. Doctors held no hope that he would recover and told his parents he would most likely die by Feb. 5, his birthday.
In Rdean’s child-like mind, he didn’t comprehend the extent of his illness. He smiled and laughed with his family, even in his weakened state – and he slowly began to recover.
“He didn’t know he was supposed to die, so (he) smiled through it and he got better,” his aunt, Debbie Day, said. “They say that attitude is key in recovery, and Rdean is living proof.”
He proved it repeatedly, too, recovering not only from the numerous bouts of pneumonia, but from cancer. In 2004 he was diagnosed with stage 4 non-Hodgkin’s lymphoma. He suffered a heart attack linked to the treatments and developed cardiomyopathy. Doctors again gave the family their grim prognosis: he wouldn’t last more than three months, they had said. It now has been three years.
Medical experts offer no explanation as to how Rdean has made such a miraculous recovery – and has recovered so many times. His family, however, has an explanation.
“He is so joyous and so full of love,” Debbie Day said. “He’s just a trooper. We could all learn a lesson from Rdean to pick yourself up and be thankful for the day.”
Rdean’s biggest trial now is his lack of teeth. Because of GERD, he is left with only a few teeth on the bottom and is unable to chew food. His family purchased dentures for him, but he refused to use them. He had an experimental roundhouse bridge put in, but it is wearing out and starting to cause him pain. Although he has Medicaid, it will not cover the cost of teeth implants, which seem to be the only alternative for Rdean.
Since he has been unable to eat regular food, Rdean, 39, and at 5 foot 8 inches tall weighs only 110 pounds. He typically turns away from most mashed foods, not accepting them as “real food.” He has been fitted with a feeding tube, but needs to swallow to keep his esophagus functioning.
“He wants to eat so badly he hides food in his pockets,” Debbie Day said. “He tries to save it, thinking he’ll be able to eat it later, but with no teethâ€-”
Rdean has been staying with Debbie Day in Burley, but his parents visit him frequently. He is an important part of their lives, just as they are an important part of his. He also is the grandson of Donald Sr., who passed away earlier this year, and Suzy Day, and the late Glen and Viola Fox of Burley.
“He loves his family,” his father said. “It’s extraordinary how he loves his family. And he loves people. He will give anyone a hug. He has such a strong will to live. He is Dad’s hero.”
|Want to help?
An account has been set up to help raise funds for Rdean Day of Burley for teeth implants. Donations can be made in his name at any First Federal Bank branch. “After all he has overcome, he deserves to have some teeth,” said his aunt Debbie Day.