WHEN their four-year-old daughter was identified as a bone marrow match for her baby brother, the Howells were faced with the most difficult decision of their lives.
But with baby Zenek given just two years to live without a transplant, there was no choice – Katarzyna donated her ‘magic blood’ to her sibling in June 2013.
Nearly a year on, doctors are hopeful that Zenek, who turned two last Thursday, will recover fully. He is currently being monitored and will remain in isolation until June.
“She was four and it was daunting,” said their mother Wanda, of Ferndale. “But you don’t have a choice really. His prognosis without a bone marrow transplant was just two years to live.
“We did a lot of explaining. We told her she had magic blood to save her brother and that his blood didn’t work very well. We explained the operation process to her. She was really brave.”
Zenek was born with small bruises on his body and was diagnosed with Petechia, which are round red spots under the skin caused by bleeding into the skin.
He was then diagnosed with Wiskott-Aldrich Syndrome, a genetically inherited immunodeficiency disease.
Zenek’s immunity was so low he was not allowed in public places, which had a profound impact on his sisters.
“The beginning was horrendous because we had four other children to worry about, then this seriously ill baby and we didn’t know what was wrong,” said Wanda, 37. “We didn’t even know whether he would live or not.
“The impact on the four other children was massive. We were quite an active family, always taking the girls out, but all that had to stop, especially after his diagnosis.
“Because his immune system was so low we couldn’t do anything outside.For the children it was an absolutely devastating time and you can still see the side effects of it now.”
Hospital appointments took their toll on Alun and Wanda, making it difficult for them to be there for their other children, Katarzyna, Magdalena, 11, Anastazja, nine, and Zefiryna, seven.
Without support from the Rainbow Trust, the strain would have become overwhelming for the family, as would the isolation for Zenek’s sisters.
Thanks to the help of worker Oonagh, who took the girls under her wing, the sisters’ lives recovered some semblance of normality.
“Having Oonagh here meant they had someone concentrating on them,” said Wanda, who is hoping to raise awareness of the charity’s Born Friends Week, which began yesterday and aims to highlight the impact having a seriously ill brother or sister can have on their siblings.
She added: “The very first time she was here, she started doing some arts and crafts on the table with them and it was the first time she’d met them but they were just really happy.
“It’s been hard for us to give them attention. Because Zenek was only a baby I just had to constantly hold him so he didn’t roll over and bruise and start bleeding again, so he was always in my arms, which meant when Alun wasn’t working, he’d be here clearing up or cooking.”
“With Oonagh, they really grew in confidence and it made them calmer in their approach to things. I guess because they weren’t as panicked.
“She really adapted to their ages as well, the elder ones got to chat with her and play around and the younger ones got the attention from her that they needed.”
- To find out more about the Rainbow Trust and its Swindon drop-in group visit www.rainbowtrust.org.uk