Ellie Carnell, aged 12, is signed up to run the Kelvingrove Park 5km in Glasgow. Ellie is one of only 3 people in Shetland with PKU and is excited to be involved in an event that she might meet other people with her condition at.
The journey to the race on the 15th September will involve an overnight ferry, 14 hours to Aberdeen, then a 4 hour bus ride to Glasgow. That is a 36 hour round trip to take part in the race!
Having PKU in Shetland has its own set of challenges. In her 12 years of life her care has been passed from Aberdeen, to Edinburgh and now to Glasgow. All her appointments are done online now, which actually took away her one bonus to having PKU… Occasional trips away from Shetland!
The family also has very limited access to low protein fruit and veg. The family moved home when Ellie was 7 because they lived on a very remote island, Unst, and only got fresh fruit and veg on that island on a Tuesday and Thursday. Now they live on mainland Shetland, they have a Tesco nearby, but in the winter there are often freight boat cancellations, so have to ration the lettuce and strawberries.
Through it all Ellie has done incredibly well, she is very good at looking up new recipes and cooking new foods. She especially enjoys new food lists from the NSPKU, she very often finds surprises in there and the joy on her face is something else.
Ellie has classic PKU, and is on 3.5 exchanges a day, and is not a candidate for sapropterin, so she knows she’s in this for the long haul.
Running for this race has given her a great focus and she is training hard with her elder brother Kit while he is home from university. They are a team to be reckoned with!
The NSPKU would like to say a HUGE thank you to all of our runners, and especially to Ellie and her family who are making the incredible journey from Shetland to this event.
Not running? Support the NSPKU Race to £10K by helping us reach our target: www.justgiving.com/campaign/nspku-race-to-10k
Each donation is gratefully received helping the NSPKU carry out their work in Education and Research, Support, Community and Advocacy. Good luck to all of our runners!
