By creator to www.tahlequahdailypress.com
A Park Hill household is hoping somebody with Kind O blood will come ahead to assist 9-year-old Dakota Roe in his want for a stay kidney donation.
Dakota was born with a really uncommon metabolic illness, cystinosis. Solely 500 individuals within the U.S., and a pair of,000 worldwide, have the illness. Dakota is the second particular person recognized in Oklahoma.
“It impacts all organs in his physique. The primary one is his kidney. It is prompted kidney failure since he was about three years outdated,” stated Cara Amos, Dakota’s mother. “With particular remedy, it has been in a position to gradual it down just a little bit, however he is on the level the place he wants a brand new one.”
In line with cystinosisresearch.org, cystinosis is a metabolic illness wherein the amino acid cystine will get into the cells, however has no method out. This defect causes the cell to crystallize, which causes early cell loss of life. Cystinosis slowly destroys the organs within the physique, together with the kidneys, liver, eyes, muscle mass, and the mind.
“We have been making an attempt to get the phrase out since final summer time as a result of we knew it was coming,” stated Amos. “If we do not discover a donor, the kidney may die out. It is so massive and he is so small, it could possibly be damaging.”
Dakota had a gastrostomy tube and a dialysis port put in final 12 months. He was a 7 on the organ donation ready record till final Friday, when he was moved to a 1, which implies the medical urgency has elevated.
On Wednesday, Amos obtained phrase from Dakota’s kidney physician that her son is “proper on the sting of needing to begin dialysis.”
“We do labs once more in March and people decide if he’s going to begin dialysis,” she stated.
“He has not executed dialysis earlier than. Dialysis can be horrible for him due to how little he’s. They stated his finest guess can be going to the hospital to do it, so we must go on Mondays, Wednesdays and Thursdays to Oklahoma Metropolis.”
Amos did should stop working to remain dwelling and handle Dakota, in addition to be capable to make his appointments.
Dakota has three or extra specialists in Oklahoma Metropolis, and development hormone therapies in Tulsa.
He is the shortest in his class, and Dakota’s dad stated he seems to be extra like he is a 5- or 6-year-old.
“He is skinny, however with an enormous ol’ stomach,” stated Joseph Roe. “What he goes by means of each day – with all of the medicines – you may’t inform. He treats everybody nice. He could make a complete room smile. You could not ask for a greater child.”
Dakota needed to be taken out of Keys Elementary College as a result of he stored getting ailing. To go time through the day, Dakota’s mother stated, he likes to do his homework, watch YouTube movies, and to play together with his child brother.
“He is nonetheless a Keys Cougar at coronary heart,” stated Amos. “He is exhausted more often than not – extra so than not. He does have some ache. He is been getting kidney stones loads these days.”
When requested if he wished to speak to the Every day Press, Dakota simply wished to say “hello” to his favourite deputy, Jerrod Rye.
“For his birthday final 12 months, the one factor he wished was to be baptized. He had invited a few of the officers on the [Cherokee County] Sheriff’s Division to look at him get baptized,” stated Amos. “His dream is to be chief of police when he grows up.”
Dakota is Kind O-positive, however the donor could possibly be Kind O-positive or Kind O-negative.
Those that have the fitting blood sort and are severe about being a donor can name Lesli Summerhill, a residing donor coordinator with the Oklahoma Transplant Heart on the College of Oklahoma Medical Heart, at 405-271-7498.
“They contact Lesli, and do a 30-minute cellphone interview. They’d doc their blood strain for every week. After that, they might go in for testing,” stated Amos.
The donor wouldn’t should pay for something.
“It is fully paid for by our insurance coverage and the transplant crew,” stated Amos. “Once we do discover a donor, Dakota has to undergo loads. They should make his immune system nearly nothing, so when he does get a kidney, his physique would not reject it.”
The donor can be out of fee for about two weeks, with no heavy lifting for six weeks, in accordance with Amos.
Dakota should keep in Oklahoma Metropolis for a minimum of three months after the transplant, with a kind of months within the hospital.