A local boy is looking for someone to come forward as a living donor.
Former Wallaceburg resident Shelly Caron told the Sydenham Current her 11-year-old son Owen was born with polycystic kidney disease. The progression of the ailment means her son needs to have a kidney transplant.
“At the time he was born, he was stage three. He has roughly stayed at this stage until recently. As they get older the hormones make things work less when they have this disease,” said Shelly, who now lives in London with her family.
“Right now he has one kidney and it only works at 19%. At %15 is when they start dialysis and all that other jazz. They want us to try and get somebody as a donor and get them worked up etc. because they don’t want him on dialysis.”
Shelly said her son is a very active kid.
“Anyone that sees him thinks I am full of crap when I say what is actually wrong with him.”
Shelly said Owen will be the youngest kidney transplant ever at the London Health Sciences Centre, once it’s completed.
Looking for a donor
“Right now we are just looking for is a healthy individual that would be interested in being a possible living donor for him,” Shelly said.
“Because the kidney is one of the more friendly transplants, there is not very many stipulations. Just someone who doesn’t have high blood pressure. They want someone healthy and active. He is an ‘O’ blood type so to get a kidney transplant the negative and positive doesn’t matter. When they would call they are going to do a quick phone interview and that’s going to tell them if that person is going to pass and get a package in the mail or not.”
If someone wants to help, they can simply call 519-685-8500 ext. 33552 and say they want to be a living donor for Owen Hooey. More information is also available, here.
“It has tons of information about being a living donor,” Shelly said.
“What is expected from you and then what the government will help you do and all that other stuff.”
Shelly said Owen is not in the “emergency stage” right now, but it is getting close.
“They explain it to my son as your battery is dying and we need to fix you before it dies all the way,” she said.
“If it was (at the emergency stage) my kid would be on dialysis. We are not that far yet, so we are very hopeful.”
If a donor is found, the turn around could happen quickly.
“The testing for a living donor is usually about three months and then after that, like I said, we go to the doctors every two months. So if anything changes we would know if they wanted to speed things up,” she said.
“Every year they tell us a different age. We have been told ‘by the time he hits double digits he is going to have a transplant’ and then the last one was ‘by the time he is 13’ he will have it. They haven’t really given us a timeline. It really depends on his kidney function when we go back each time. So it is really our nephrologist’s call.”
Shelly said in terms of finances, the majority of Owen’s care is covered through Shelly’s husband’s benefits.
They also have an aunt who is getting tested for the possibility of being Owen’s donor.
Hormones causing kidney to lose function
Shelly said the doctors are telling them it is Owen’s hormones that are making his kidney work less and less.
“The kid stayed at 36% for the first nine years of his life,” she said.
“So it has really been over the last two years that is has started to go down.”
She said Owen has started to become more tired as a result.
“We have to give him an injection every month because his hemoglobin levels are low. At the end of last year he was having trouble staying in school all day because he was so tired and felt like he was going to pass out. Apparently it is common at this stage, but it is something that I didn’t expect. To be giving my son needles, I don’t do that very well.”
Shelly said Owen is doing the best he can.
“Right now we have him seeing the school counsellor and social worker, so he does have time away to talk about his feelings,” she said.
“When we had our big appointment in August to determine if he was a good candidate, they had to tell you everything. So they are telling my kid there is a one in five per cent chance he could get cancer from this and a whole bunch of other crap. So at that point I was sort of mad because we are used to the kids hospital where they monitor everything that they say, because kids can only need to know so much. At university they didn’t do that, so that was not a nice day.”
From Wallaceburg, to London
“We moved from Wallaceburg to London before Owen was a year old, just because we needed appointments and everything else,” Shelly said.
“There was more here for him as oppose to Wallaceburg, or the dreaded hour and a half drive. We are seen every two months at the hospital, so it does add up.”
Shelly said she has been working with the nephrologist since before Owen was born.
“I was 34 weeks when I found out something was wrong,” she said.
“With this disease, it’s normally a genetic disease so it has come from somebody. Owen would be 1 in 10% of the population that has it, where it is no where else in our family. We have searched high and low and anywhere possible, and cannot find it anywhere.”
Once again, if someone wants to help, they can simply call 519-685-8500 ext. 33552 and say they want to be a living donor for Owen Hooey.
More information is also available, here.
– Submitted photos