"Mummy, I just want to be at home for Christmas"
To have a Christmas at home rather than in hospital is the present Jakub Steczkiewicz from Sanfoine Road, Luton has asked Father Christmas for this year.
Jakub, 6, is one of only a handful of people to have ever had five of his organs transplanted at the same time - twice.
His parents Edyta, 27, and Artur, 38, Steczkiewicz are unsure what the 25 December will hold.
“Planned or not, Jakub’s spent every Christmas of his life in hospital,” said Edyta. “His immune system has been wiped out so the smallest germ makes him so ill. He’s only ever been to school for one day in his life, he can’t play out or really mix with other children,” she said. “It’s hard because we can’t make any plans.”
Jakub has Hirschsprung’s Disease which affects his bowel. He has a stoma bag and is fed through a tube.
“Last Christmas, Jakub was in intensive care,” said Edyta. “His transplant had failed and he also got cancer. His body rejected every organ - the small and large bowel, liver, pancreas and part of his stomach.
“We were so scared and had such mixed emotions about putting our little boy through the same multi organ transplant operation again. What was the right thing to do? But when Jakub said, ‘I just want to be alive,’ he made the decision for us. In August this year, we went ahead for the second time.
“We’ve spent most of this year living in a London hospital. Seeing your smiley boy looking so sad, in pain and desperately wanting to go home is horrible. Jakub was depressed, he didn’t talk and he felt like a prisoner.
“I can honestly say Keech Hospice Care is the best thing ever. We found the charity at a time in our lives we were so scared and needed help. Keech is so much more than just a building in Luton where people go to die. I don’t think people realise what the charity does out in the community.
“Keech’s play specialist, Jennie and the charity’s brilliant volunteers visit Jakub in hospital in London, or at home, on the rare occasion we’re there. Through play, Jennie brings Jakub back out of his shell. I can’t tell you what it means to sit down or take a break for just five minutes knowing Jakub’s in safe hands and with people who bring his smile back.
“Will Jakub’s wish to have a Christmas at home come true? I don’t know. It’s something we’d all love, it would be so special but I’m not getting mine or Jakub’s hopes up. As a family we live in the now - not the tomorrow.
“Will the second transplant work? What we do know is it can fail any day. As a Mum, it’s hard not to keep thinking Jakub is only alive today because another Mothers child isn’t. It’s something I think about a lot. As much as I hope we get our first family Christmas at home, I’m just so grateful to even have Jakub this Christmas."
Our Christmas Stars campaign features several of our families in the Luton on Sunday every week on the run up to Christmas. If you would like to donate and buy a gift for our Keech Christmas Stars, please click here. If you would like to send a cheque, please make it payable to Keech Hospice Care and send it Freepost to: Freepost RTGX-KAEH-XGRA. Thank you.