A brother and sister from Oakham, Rutland are eagerly looking forward to taking part in a major national sporting event next week. Eleven-year-old Wren and her ten-year-old brother Milo are heading to Nottingham to take part in the British Transplant Games, which takes place from August 1 – 4.
Both children were born with the rare liver disease, PFIC-2. Milo received a liver transplant when he was just two years old, and Wren was transplanted three years ago at the age of seven. This will be the second Transplant Games for the siblings who are competing in running, long jump, cycling and ball throw events.
“For all of us it is about meeting people who have been through the same things we have,” explains mum, Rachel Nealson. “Although Wren and Milo enjoy sport, there are things which disadvantage them compared with their non-transplant receiving competitors. For example, the fact that they are both still much smaller than average, so they really enjoy competing in a more level playing field. Our older daughter, Annabel, who is healthy, will be taking part in the sibling events so the whole event really is a great celebration of the gift of organ donation.
“The Games will also be a chance to catch up with the team from Children’s Liver Disease Foundation. The charity was the first port of call when we needed sensible and assured information when the children were first diagnosed and we’ve always reached out to them when we can’t find an easy answer to a problem.
” I met a CLDF representative at Kings before my first ever appointment there and it was nice to have someone explaining what would happen and what to expect when we were in this new and overwhelming environment. It gave me the knowledge needed to advocate for them properly. CLDF helped us find a grant from an international PFIC organisation for tutoring when the children fell behind academically due to Wren’s transplant occurring during lock down and shifting our focus from home schooling. They also organised a last-minute place for my Dad in last year’s Donor Run at the Transplant Games which made it easier to have him join us for a day. He has helped us so much with child care when children are in hospital so is a big part of transplants in our family.”
Michelle Wilkins, Head of Children’s and Families’ Services at Children’s Liver Disease Foundation commented: “The Transplant Games is a wonderful example of what organ donation really means. We shall be there as it’s a great opportunity to catch up with families we have supported over many years and see the fantastic progress their children have made. So we’ll definitely be cheering on Wren and Milo in their quest for medals!”
