Family’s desperate wait for a kidney transplant for son
“CAN I do it?” was the first question Kamil Chmieleski asked himself when he found out his eldest son needed a transplant.
This superhero dad now needs some good karma to roll back around in his favour after he donated a kidney to one of his sons two years ago.
Now his youngest is going through the same thing, and is currently impacted by end stage kidney disease.
A transplant from a donor is now the Bridgend family’s last chance to save their son Alex as his mum, Katarzyna, had originally been planning to donate her own but was not able to because of some stones on her kidneys.
Alex, 10, has been waiting since March, and is receiving a large amount of extra care from his parents to support him with his health challenges in the meantime.
It comes after he was born with rare genetic disorder Joubert syndrome and missing chromosomes.
Alex’s older brother Gabriel, who is now 12, has had his kidney transplantation for two years.
When Gabriel got the diagnosis of kidney failure it came as a complete surprise to the family, and it took six months until he could receive a kidney from his father.
In comparison, Alex has been waiting for eight months and counting.
Due to Alex’s health issues, the family knew that he would need a transplant one day but were never sure when, and this day came last year. Considering what it was like to be able to give his kidney to one of his sons, Kamil said: “I think any parent would do it. It’s not something I thought about a lot at the time when we found out Gabriel needed one.
“A few people have kind of said that it’s heroic but I didn’t really see it like that at the time. My first question when we found out that Gabriel needed a transplant was ‘can I do it’?”
Now having to play the waiting game, the family is in limbo until they find out that there is a suitable donor for Alex.
Kamil said: “How long it is all going to be, we don’t know. Cardiff hospital, they do their best. But they cannot possibly promise anything at this stage without a confirmed kidney donor, so we are basically going day by day at the moment.
“Unfortunately my wife was denied from live transplant because of stones on her kidneys and I already gave my kidney to Gabriel.
“[Alex’s] dialysis is overnight at home for 10 hours so we’re able to carry on as normal a life as possible to keep him happy.
“Alex is in his last stage. Transplant is his only chance as his results are getting worse and his medication is increasing to keep him stable. The worst thing of waiting is we never know what is going to happen tomorrow. Every day is a new stressful challenge.
“We can’t go anywhere for more than a day without a dialysis machine, we can’t visit a family, parents in Poland or anywhere in the world together, always separate. Alex is missing a massive part of his childhood activities.”
Kamil added: “It is difficult dealing with the uncertainty because Alex is only a child. He is missing the best years of his life at the moment so it is difficult trying to manage everything and keep on top of the medication, and his health as well as still trying to do fun things with him.
“Transplantation is one of the biggest blessings that one person can do for another. It can save so many lives, but for some reason people are scared.
“The best thing is to see how my son Gabriel is growing after his kidney transplant – if I could I would do that again. Anytime for anyone!”
Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come, according to the NHS.
In 2021-22, just 52% of families who were approached about organ donation gave consent for their child’s organs to be donated.
This represented just 40 organ donors under the age of 18. But in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation.
To raise awareness of the need for more child organ donors, a campaign has been launched that sees children transformed into handmade dolls that have been placed across the country.
Each doll is wearing a badge inviting people passing by to scan a QR code and hear stories of children waiting for transplants from across the UK.
Alex’s doll is being hosted by Noah’s Ark Children’s Hospital for Wales and it is hoped that the dolls and the reallife childrens’ stories will inspire more parents and families to consider organ donation and add themselves and their children onto the NHS Organ Donor Register.
Angie Scales, lead nurse for paediatric organ donation at NHS Blood and Transplant, said: “For many children on the transplant waiting list, their only hope is the parent of another child saying ‘yes’ to organ donation at a time of immense sadness and personal grief. Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride.
“When organ donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier.
“By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”
To add yourself and your child/ children to the NHS Organ Donor Register, go online and search for the Waiting to Live campaign.