A 21 month-old girl dealing with an extremely rare genetic disorder has united 21 determined mothers who are training for this year’s St Andrews Triathlon.
While the coronavirus outbreak has seen the St Andrews event postponed until September, Team Esmee, led by mum Juliette Paris-Newton, have mapped out a contingency triathlon route around their native Midlothian, including a swim in open water.
Keeping ‘social distancing’ at all times, family friends from Juliette’s original home country of France and neighbouring Belgium, who are unable to join the team in person due to current travel restrictions, will match join them in solidarity with parallel efforts in Marseille, Paris, Reims, Lyon, and Brussels.
All proceeds will go towards Rachel House-based Children’s Hospices Across Scotland – better known as CHAS.
St Andrews Triathlon has meanwhile pledged to donate 10% of the cancellation fees for those who can no longer participate on the new date to CHAS.
Through JustGiving, the group have set themselves a collective goal of £3,000 and are well on the way to smashing their target.
Speaking ahead of Mother’s Day, Juliette said: “Esmée’s condition is so rare that there are only a few cases in the world and as yet there is no name for it.
“Our daughter does not see the world like most other children do. She loves to be under trees and lights and to see their shapes and shadows.
“She has super magic ears (cochlear implants) to help her hear, her heart is not totally in tune, breathing is not always easy, and at the moment she needs special support to sit up.
“Esmée’s favourite person in the world is her big sister, and her favourite thing is to laugh at funny faces, particularly if you sneeze and move your head around like an owl.”
Juliette explained the family put together a video narrated by Esmée’s big sister, aged 6, to tell their story.
“We have quite a lot of ups and downs,” she said. “We have to spend quite a lot of time in the sick children’s hospital. We work with a team of specialists who help to look after Esmée, which means we have a long list of medical appointments every month. Esmée has had several operations so far, with more on the way. We have been lucky to receive a lot of support. Rachel House, part of CHAS, has been a wonderful support, too, since the earliest months of Esmée’s life.
Sarah Dannfald, community fundraiser at CHAS said: “At CHAS we are so privileged to work with so many inspiring families and the Paris-Newtons are no exception!
“Juliette and Esmée have inspired their friends and family to fundraise alongside them, not only at the St Andrews Triathlon but in their local community as well.
“We are so grateful for the support of everyone involved, it will allow us to continue looking after families like Esmée’s as well as reaching even more families who need us.”