PRIMARY school teacher Elizabeth Smiley’s world fell apart when her beloved daughter Megan was cruelly taken from her by a rare genetic disorder a little over a month after she was born.

Baby Megan lived for only 34 days, but it was to be a special period her family – Elizabeth, dad David, and sisters Rebecca and Katie – will cherish forever.

Edwards’ syndrome is a life limiting condition caused by an extra chromosome 18, which in Megan’s case, was in all of her cells.

Around one in every 12 babies born with the condition survives beyond one year – all forced to cope with severe physical and mental disabilities.

“At my 20-week scan, a cleft lip was picked up on but we were assured that was all and a simple operation around four months would repair this,” explained Elizabeth, 34, a teacher at Lochwinnoch Primary School.

“We were told her low birth weight was due to a poor placenta or intrauterine growth restriction (IUGR).

“Megan was born weighing 4lbs 13oz and her dad David and I continually questioned why she was so small given the fact our other two daughters, Rebecca and Katie, were born weighing 8lb 10oz and 9lb 2oz respectively.”

Megan was born with no gag reflex and had to be fed using a tube. It wasn’t long before blood tests were taken and doctors discovered she had Edwards’ syndrome.

“We immediately looked it up and broke down in tears considering the majority don’t even reach birth due to terminations, miscarriages and stillborns,” Elizabeth said.

“From then on, having defied all odds to be here, we knew she’d be a fighter. We knew her life would be short but we held each other tight and faced the challenges ahead.

“We took advantage of every opportunity made available to us and from then on we tried to allow Megan to experience as many opportunities as possible and tick things off her bucket list during her time with us.”

Given the time of year, David, 31, and Rebecca, six, and Katie, three, were practicing for their nativity play at Lochwinnoch Primary and nursery.

The ‘wriggly nativity’ songs became very special to to the family as Rebecca and Katie would sing these to Megan often in hospital.

Megan got home in time to see her sisters perform their nativity play at church, go to the bookbug Christmas party and experience walks around their picturesque home village.

“We were referred to Robin House in Balloch and subsequently were booked in for a short three day stay prior to Christmas”, said Elizabeth.

“The whole time we were there I kept breaking down – always a place we knew about but never ever thought we’d have to experience, but we can’t thank Robin House enough.

“Through this time Megan was able to enjoy Christmas carol singing with instruments and Santa came to visit her.

“She enjoyed a lovely swim in the hydrotherapy pool, family walks around Balloch Country Park and we made precious hand and footprint canvasses with all our three girls that’ll stay with us forever.”

After developing breathing difficulties, Megan died peacefully in her mother’s arms on December 29 weighing under 5lbs.

“We were looking for as many family and friends to participate in the kiltwalk in memory of Megan to raise much-needed funds for Robin House and CHAS,” said Elizabeth.

“It’s been an emotional rollercoaster for us but we take pride and comfort in believing Megan never suffered.”

To raise funds and awareness of the illness, Elizabeth and her family took part in the Kiltwalk on Sunday, walking 23 miles from Glasgow Green to Balloch Country Park.

Youngsters at Lochwinnoch Primary also showed their support for the Children’s Hospice Association Scotland (CHAS), which has helped the family during their difficult time, by carrying out a Kiltwalk of their own.

Pupils were asked to come to school on Friday wearing house colours with a piece of tartan to walk the race distance of 23 miles in the playground.

A school spokeswoman said: “It was a great day – there were classes taking part throughout the day during different slots, then at the end the family walked with everyone.

“Around 260 pupils took part and we managed to raise £362 for Elizabeth’s fundraiser, which we are really pleased about.”

To donate to Elizabeth’s Just Giving page, visit www.justgiving.com/fundraising/Elizabeth-Smiley