Getting muddy to help Megan

Getting muddy to help Megan

22 June 2016

A MONEYCARRAGH family got mucky for Megan at the weekend — a little girl with a rare chromosome disorder.

Megan Lismore’s friends and family took on the Fin Fun Mud Run — a 3.5km mud run through water filled ditches — to raise money for the charity Unique and to highlight its Rare Chromosome Disorder Awareness Week.

Five year-old Megan’s condition is actually so rare that it doesn’t have a name, and is simply called ‘18p deletion’ referring to an abnormality on the 18th chromosome.

In doing the Mud Run, which has so far raised almost £2000 for the charity, the Lismores also want to raise awareness of the daily struggles such children and their families face.

Megan’s disorder affects her in various ways. She has speech difficulties, low muscle tone, feeding problems and is small for her age. She also has a low immune system so regularly gets coughs, colds and other bugs. Despite this, her family have always tried not to treat her any differently and say she is making great progress with the help of speech therapy and physiotherapy.

With the help of a classroom assistant, Megan has fitted in well to her mainstream class at St Mary’s Primary School, Aughlisnafin, where she is a popular pupil.

“She loves school,” said mum Jackie. “She got so much better in her reception class. It gave her confidence. 

“She would become quite frustrated if anybody did not know what she said. She would be a bit embarrassed now she is older and more aware. But she absolutely loves school. 

“I think she is one of the wee pets in the school. She loves her teacher and tells me how many hugs she has given her today.

“She is very babied in a good sense. Of course, she can also be a wee madam as well.”

Initially Megan’s family hoped she was simply developing slowly after her birth but later became concerned and sought medical tests. Her condition was finally diagnosed at the age of three.

“We were lucky in that it was not as bad as it could be,” said Jackie. “We won’t really know condition until she reaches certain milestones.

“Some people with 18p deletion live independent lives and some don’t.”

As conditions like Megan’s are so rare, parents can end up feeling confused and isolated. By raising public awareness, Jackie hopes to increase understanding and acceptance among medical professionals, in the education system and in the wider public. She says she wants as many other families as possible to join groups like Unique “to receive the best support you can get from a charity and other families who know what you’re going through”.

As well as Jackie, Megan’s dad Jamie, sister Jessica, her aunties, uncles and cousins all took part in the mud run. Jackie said she had been blown away by the support and thanked everyone who had taken part or donated so far.

To make a donation to the Lismore’s ‘Team Megan’ appeal visit their Virgin Money Giving page at http://uk.virginmoneygiving.com/team/Megan 

For more information on rare chromosome conditions visit Unique’s page at www.rarechromo.org