September 25th, 2016

Tragedy spurs efforts to raise cash

Updated: 5:14 pm, May 06, 2015

AN EVESHAM couple who tragically lost their daughter three days after she was born hope to create a lasting legacy in her memory.

Fliss and Stew Reading were left devastated after losing their daughter Ayla to a condition called Edward’s Syndrome.

The caring Vale parents received support from the charity SOFT UK and are organising a 50s vintage summer ball in Ayla’s memory at the Wood Norton Hotel on June 7.

Drinks, a three course meal, music and a raffle will be among the entertainment for a fund-raising evening which the kind-hearted couple also hope will raise awareness of the condition.

“We want to raise awareness of Edward’s Syndrome and raise funds and awareness for SOFT UK because they helped us from diagnosis all the way through and still support us now.” Fliss said.

“I volunteer for them now and they have become part of the family. They deal with specifically with Edward’s and Patau’s. It’s quite a small charity but they are doing a lots of stuff in trying to medical professionals involved and getting information out

there.

“It’s not just a case of children die as not all of them die and they want to break down the barriers.”

Edwards Syndrome is the second most common abnormality after Down’s Syndrome and the couple discovered the news during their 20 week scan in Evesham.

After the scan, they were sent to Worcester and then to Birmingham for further tests.

Heartbreakingly, Fliss and Stew were then told over the phone Ayla had Edward’s.

“We could have done with someone in person telling us. I can’t remember what happened after the phone call.

“Julie Poultney, the screening co-ordinator at Worcestershire Royal Hospital was an absolute lifeline to us. We were going to see her as often as we needed, she was fabulous.

“It was very hard because we knew we’d lose the daughter we hoped we would have.” Fliss said.

The couple continued with the pregnancy and Ayla Hope Reading was born on February 1, 2012.

“It was bittersweet, but when she was born and she was alive it was amazing. As much as it hurts, it was more than we expected after the 20 week scan.”

The couple have a son Zach and have gone on to have ‘our rainbow’ Luke who was born last year.

“It’s extremely hit and miss, just because you have had one baby with Edward’s does not mean you will have another, you have the same risk as everyone else.” Fliss said.

Husband Stew added: “We had little marks we wanted to hit and every time we got to one and ticked it off we were on to the next one.”

Booking forms for the summer ball are available from Studio 3 Photography, Butterfly Wings, Hampton Farm Shop, Daisy B Nell and Millie’s Diner.

E-mail aylaslegacy@gmail.com for more information about the event.

WHAT is Edward’s Syndrome?

* Also known as Trisomy 18 (T18), Edward’s Syndrome is a chromosomal disorder caused by the presence of all or part of an extra 18th chromosome.

* It is the second most common autosomal trisomy, after Down syndrome.

* Nearly three-quarters of babies with the syndrome are miscarried or stillborn and the babies who survive beyond one year will have a developmental disability.

* Edward’s syndrome affects around one in 3,000-5,000 births.

* In most cases (around 90 per cent), signs that the baby may have Edward’s syndrome are picked up at the routine 18 or 20 week ultrasound fetal anomaly scan.

* There is no cure for Edward’s syndrome and the symptoms can be very difficult to manage

Ayla who was born on February 1, 2012. Picture supplied by Fliss and Stew Reading

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