Magda and Mark Slaney have a big wish for Santa this year. It isn’t an expensive toy or money — it’s a kidney for their very sick boy, Ryker.
Doctors recently gave the couple good news. After spending most of his short life in hospital, on dialysis and being fed through a tube, Ryker is able to have a kidney transplant, should one of them be a match or an organ becomes available elsewhere.
Kim Snow of Kimz Angels, a group of volunteers helping people in the community, heard about Ryker and knew she needed to help.
“We can only imagine the physical, emotional and financial toll this has taken on Ryker and his family,” Snow wrote on her Kimz Angels blog: “Angels Rally for Ryker”.
“There is something we can all do to make things better. We can show them that their community supports them — that we are all here to help in any way we can — that they are not alone.”
She points out that we all have responsibilities to pay our bills, buy groceries, go to work.
“Now, just imagine if you had a child who was very sick and required around-the-clock care with constant doctors appointments, medication and dialysis supply deliveries, and various other specialists appointments?”
This has been Mark and Magda’s reality, with Mark being the only one able to work, while Magda cares for their son.
At just five weeks old, Ryker was diagnosed with congenital nephrotic syndrome, and it’s been a constant barrage of blood work, tests, hospital stays and dialysis ever since.
Ryker was born in July 2014. His parents were told a skin tag by his ear could be a sign of potential kidney problems, given that ears and kidneys develop at the same time in utero.
His rare disease means he is susceptible to malnutrition and kidney failure.
Ryker’s kidneys did fail. He was put on dialysis 24 hours a day at first, then 15 hours a day for three months.
While all of this was going on Ryker lost interest in eating. He needs to be in a particular position to drain the fluid properly, which means that every hour his parents need to move him.
Failing to do so causes him to retain fluid, the resulting pressure leading him to vomit.
“Ryker has been so strong through this whole ordeal. His smiles and laughs are what keep his family going,” said Magda.
At 16 months, Ryker weighs only eight kilograms. But with a bit more weight gain his doctors believe he is ready for a transplant.
A live kidney is his best chance, said Magda. Both Magda and Mark are being tested, but if they aren’t a good match they are asking anyone to come forward and contact St. Paul’s Hospital directly to see if they could be a match.
“The doctors stress that transplant is not a cure, it is another treatment,” said Magda. “After transplant Ryker will be on anti rejection medication for the rest of his life. . . However, the benefits outweigh the risks and he will not have to be hooked up to a machine 13 hours every day and will have a chance to catch up with his growth and development.
“He will hopefully also be feeling better which, in turn, will cause him to have more energy to run around and be a troublemaker, like he should be at this age,” she said.
The Slaneys have been told the year after transplant is the hardest, with constant check ups in Vancouver. Anti rejection drugs will make him feel awful and leave his immune system weak.
Through it all, the Slaneys hope their story will inspire more people to register as organ donors, “because there are so many people waiting on a list needing various organs for either a better quality of life or for survival.”
Magda said she and Mark love to travel and their dream is to someday take Ryker to see the world, but until then, “we are taking it one day at a time, concentrating all our love and attention on Ryker.”
In the meantime, Kimz Angels is hoping the community can help ease some of their stress.
Please contact Kimz Angels to see how you can help (clothing, gas cards, groceries, gift cards, etc.).
Email firstname.lastname@example.org or call 604-838-6579 to give a gift or to learn more.