The family of a four-year-old girl, fighting a rare condition which has left unable to walk, talk or eat, have spoken of their devastation.

Ailey Wales was diagnosed with Wolf-Hirschhorn syndrome when she was just 10-months-old.

Her parents Shannon, 25, and Steven, 28, from Dreghorn, were devastated to learn the rare genetic condition – which affects only 1,500 people worldwide – would mean their baby girl would never take her first steps, or say her first words.

Shannon said: “We were devastated when we were told she had WHS. It was hard to take in. We had never even heard of it before, it is so rare, but to hear that your child will never walk or talk was absolutely devastating.”

Ailey was born by emergency section on September 3, 2014, after a normal pregnancy, the only concern being that Ailey didn’t seem to be growing at a ‘normal’ rate in the womb.

Shannon said: “When I went for my 20 week scan they said she was more like 18-weeks in size. We had to have a few extra scans because she was a bit on the small side, but we just thought she would be small, we never imagined it would be something like this.

“She was born weighing 4lbs 8oz and immediately doctors knew something was wrong by the way she was breathing. In the end they said she had Persistent Pulmonary Hypertension, (where the baby does not change from fetal to normal newborn circulation) and they transferred her up to Yorkhill and she was out in an induced coma for 12 days.

“Those days were terrible. Such a worrying time because we didn’t know what was wrong with her or if she was going to survive.”

Ailey survived the coma and the couple thought they would finally be able to go home and start their life as a family, but Shannon says she soon noticed her baby was not doing things she should.

She said: “She wasn’t responding to noise or following you with her eyes. It was small things but we just knew something was wrong.”

When she was four-monthsold doctors did further tests and the family faced an agonising six month wait to find out the results.

Shannon added: “It was July 2015 when she was diagnosed with WHS. It was devastating, it really was, but we just had to try and adapt.

“Even now we are just learning that Ailey is doing things her way and at her rate and we are just following her lead.” The family are now trying to raise £5,000 to go towards installing a downstairs bathroom with a special adaptable bath for Ailey.

Shannon, who also has an eight-month-old son Aaron, added: “At the moment we have to carry her up and down the stairs so having something on the ground level would be amazing. The bath is specially for someone with Ailey’s needs and can be raised and lowered to the preferred height for the person bathing Ailey. It is also equipped with built in LED lights, a speaker for music, jets for bubbles and the option for the use of a hoist in the future. It is everything Ailey loves and would make her one happy little girl.”

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WHS: The facts

Ailey's condition, WolfHirschhorn Syndrome (WHS or 4p- for short) is where a piece of chromosome is missing from the short arm of the 4th chromosome.

About 87 per cent of cases develop from the missing piece, while about 13 pre cent are inherited from a parent.

WHS occurs in approximately 1 in every 50,000 births, however, this may be an underestimate because it is likely that some affected individuals are never diagnosed.

For unknown reasons, Wolf-Hirschhorn syndrome occurs in about twice as many females as males, with only 1,200 – 1,500 cases known worldwide.

The rare condition that affects many parts of the body.

The major features of the disorder include a characteristic facial appearance, delayed growth and development, intellectual disability, and seizures.