Navan mum to run Mini-Marathon for charity that has been a ‘godsend’

The mum of a twin born with a rare genetic condition is taking part in the Women's Mini Marathon during the summer to give back to a charity that has been “a godsend” to her family.

Lyndsey McMahon will take to the streets of Dublin in June in aid of Williams Syndrome Ireland, an organisation that provides guidance and support to families of children with the condition.

Lyndsey's little girl, Lauren (3), was diagnosed with Williams Syndrome when she was just two months old and says the charity has been a vital support over the last number of years as she and her husband navigated life with their daughter. The fitness coach previously donated €2,900 from a 5km charity walk to Prosper Meath, a service provided to adults with an intellectual disabilities.

“We struggled with getting a life changing diagnosis so we reached out to Williams Syndrome Ireland and they have given us so much so now I would like to give back,” said Lyndsey.

“They have an annual weekend away every year where they have their AGM and a range of activity on for the older kids and the adults, what they offer for families is just priceless,” she added.

Lyndsey and her husband Niall were thrilled when they welcomed twins Liam and Lauren into the world in February 2022 via IVF after a tough fertility journey.

Although some development issues were flagged by medics during Lyndsey's pregnancy, the couple was determined to embrace the arrival of their precious twins and deal with any complications as they arose as the Navan mum explains.

“My little girl was born with a really rare disorder called Williams Syndrome. She's the eldest twin and she is missing some of her seventh chromosome, there is generally between 24 to 27 genes missing from the seventh chromosome and they contain Elastin which is needed for organs to grow.

“Quite often children with the condition have a hole in their heart which Lauren has and narrow lungs which she also has. They are small in stature and can have physical and intellectual delays.”

Williams Syndrome (WS) is a genetic condition present at birth that can affect anyone according to WSI. It is caused by a small deletion of genetic material which occurs spontaneously at the time of conception. WS is underdiagnosed so that the known occurrence rate is approximately 1 in 20,000.

“There are only around 100 people in Ireland with William Syndrome,” said fitness coach Lyndsey. “We don't really know yet the extent of it but she is flying thank god.

“She is delayed in some of her milestones but she goes to creche here in Navan and she has a twin brother and the best thing for her is to be around her peers. She is really thriving.

“She is the funniest child, she is very happy and very social and very stubborn and independent which I hope will stand to her in life. She is a very happy and content little girl which is all that matters to us.

“We have really leaned on Williams Syndrome Ireland for support on how to deal with day to day life with a child with special needs.”

The couple who underwent fertility treatment in Prague say they couldn't believe their luck when Lyndsey became pregnant with twins on the first round of IVF.

“We had unexplained infertility, we tried for years and nothing happened,” the Navan mum previously explained.

“We went to Prague for IVF solely for cost purposes in case we needed a few rounds so it cost less than it would in Ireland even with flights and accommodation.

“We were lucky, we did one round and got pregnant the first time.

“During the pregnancy, Lauren was measuring small which is a soft marker for Down Syndrome so they checked a few other things and said there was no other markers but that we won't know until she is born.

“At 12 weeks we chose not to have a harmony test to establish if there was a chromosomal disorder because we knew it wouldn't make a difference to us anyway.”

Tests after Lauren was born did not throw up any concerns but it was a meeting with a doctor in the weeks after that confirmed the shock diagnosis.

“We went for a routine check up at the end of April last year and the doctor told us she was missing some of her 7th chromosome like we already knew so that came as a bit of a shock.

“Things should have been handled differently and we lodged a complaint with the hospital and met with them to discuss the matter.”

It was at this point that the couple sought the help of Williams Syndrome Ireland.

“They sent us out a hamper and a card welcoming us to the family and they put me in a Whatsapp group with other parents of children with Williams Syndrome so we could chat between each other and ask questions. Lyndsey says although the road has been challenging, she wouldn't change it for the world.

“She is thriving, we are very lucky.

“Children with Williams Syndrome are born with excess oxytocin which is the happiness hormone so they are known as very social happy people, I think we could all do with a bit more of that!”

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