Parents of Gwynedd girl with rare growth condition thank charity without whom 'life would be a lot more difficult'

The family of a three year old girl born with a rare growth condition which leaves her needing to be fed mainly through a tube, have spoken of the amazing difference a charity has made to their lives.

Elena Kay has Russell Silver Syndrome, a condition which affects one in 50,000 people and which causes one side of her body to grow slower than the other, making it difficult for her to stand unaided.

But despite her difficult start to life, Elena, who lives in Dolgellau , is a happy “chatterbox” who “everyone falls in love with as soon as they meet”, said mum Olwen Kay.

Now Olwen and husband Peter are aiming to raise £2,000 to say thank you and raise awareness of the Child Growth Foundation which has “immeasurably” helped them as a family since her diagnosis.

Olwen said: “If it wasn’t for them, life for us would be a lot more difficult and stressful; a lot scarier. We now know other parents who have been in a very similar situation to us.”

The couple were first told of “an issue” when a pregnant Olwen went for a 16-week scan in 2014.

Olwen, works for the Welsh Government, said: “Her left side is slightly longer than the right. When she was born, they talked about possible dwarfism.”

Elena spent eight days at a special baby care unit at Wrexham Maelor Hospital .

The condition means Elena has difficulty eating and is reliant on a tube and tiny bits of food. She also “bum shuffles” to get about.

In October 2015 she was taken to Liverpool’s Alder Hey Hospital, after suffering a cold but became critically unwell after rejecting a cannula or thin tube inserted into a vein for medication.

Elena stayed in hospital for five weeks for her sugars to be stabilised and she had to have a feeding tube or Mickey button to her stomach.

Caring for Elena at home meant Olwen and Peter were having to teach health professionals about her non-life-threatening condition.

Olwen said: “We got them a guide book. We learnt such a lot from the Child Growth Charity and other parents.”

The couple learnt about common characteristics of the condition, such as a triangular face with a small jaw and a pointed chin, children having a tinge of blue in the white of the eye and the potential for early puberty.

“It’s a completely random condition for one in 50,000 and not hereditary”, she said.

When she is well enough, Elena, who is being raised bilingually, attends the Cylch Meithrin to socialise with friends and enjoys going to Bendigedig soft play in Barmouth.

Dad Peter, a furniture maker who stopped working to help care for Elena said: “She is an affectionate, gentle sociable little girl who has experienced things that as her daddy I wish I could endure in her place – hospitalisations, tests and countless appointments to keep her well. Day to day, encouraging her to eat, giving her age appropriate opportunities and deciding continually if she can or can’t go to someone’s party or another event due to ill health (not always hers).

“Elena needs lifting up and down to access park equipment and constant supervision to ensure her safety due to her limited mobility.”

He added: “There are days and weeks when it’s been a struggle, a challenge and physically and emotionally exhausting but as parents it’s what you do.”

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