A WOMAN from Llangollen, who's daughter was born with an extremely rare medical condition, is raising money to fund a trip to America for possible treatment.

Kayleigh Kempster's daughter Elsie Grace was born at the Maelor Hospital in Wrexham with a rare genetic disorder called Smith-Lemli-Opitz Syndrome (SLOS). The genetic disorder is thought to affect around 800 children worldwide and it is thought to affect one in 20,000-60,000 newborn children.

Due to its rarity, very little knowledge of the condition exists in the UK and this is why Kayleigh and her partner Nick Purcell are now trying to raise £10,000 for a trip to America.

The National Institute of Health in America have already agreed to see Elsie and run tests on the condition not performed in the UK

As well as being involved in further tests and understanding Elsie's needs better, Kayleigh and Nick are hoping that the trip will also enable them to attend a biannual conference which will provide an opportunity for them to meet other families of children with SLOS, talk to specialists and discuss trials and future potential treatment.

Any extra money raised will remain in Elsie's fund, which will assist in funding specialist equipment to aid her development.

Talking about Elsie's story, Kayleigh said: "Our wonderful daughter Elsie was born in October 2017 at Wrexham Maelor Hospital weighing 5lb, 4oz. Whilst we knew during pregnancy that Elsie was measuring small, we were reassured by professionals that she was a ‘structurally small but normal baby’.

"So it came as a shock to us when she was whisked away shortly after her birth to the Special Care Baby Unit. Elsie was born with unusual features, including fused second and third toes, a cleft palate and had no sucking reflex which meant she had to be nose fed. Elsie spent 17 days in Special Care before we were finally able to bring her home, a day that will forever stay with me.

"We began to notice that Elsie wasn’t meeting her milestones, i.e. not smiling, fixing and following, no head control. We put this down to her spending time in Special Care and not being ‘stimulated’ enough. However, when Elsie was just two months old our whole world was turned upside down when we received the news that Elsie was born with SLOS, to which there is currently no cure.

As a family we have been on an emotional rollercoaster, but we’re determined to fight and get the best possible care for our little girl. Elsie doesn’t fit into the standard graphs and charts but is making her own path and journey in life. We call this Elsie’s Climb."

"Please join us on Elsie’s journey by supporting in any way that you feel you can, even if it’s just sharing and spreading awareness. We hope part of Elsie’s journey will be this much desired trip to America."

If anyone would like to support Elsie's Climb, visit the Just Giving page at justgiving.com/crowdfunding/elsiesclimb