CEFNEITHIN: £7,350 for the two-year-old her family believe is the only child in the world with her conditions

A golf day at Machynys has raised £7,350 for a two-year-old from Cefneithin who lives with two extremely rare genetic conditions.

Liwsi was born on 31 October 2023 and spent her first days in intensive care, needing help with her breathing and feeding.

A routine chest X-ray picked up something unusual. She had 11 sets of ribs rather than the usual 12, and doctors suggested genetic testing as a precaution.

Three weeks later her parents were told she had Cri du Chat syndrome and an Xq28 duplication translocation. Both are rare on their own, and her family say she is believed to be the only known child in the world with the two together.

Because of that, they say there is almost no research to tell them how the conditions will affect her as she grows.

Liwsi lives with global developmental delay, milestone regression, learning difficulties, low muscle tone and respiratory problems, according to the family’s appeal.

The money raised goes towards physiotherapy, hydrotherapy, intensive therapies and specialist equipment, the things that are meant to give her the best chance of independence.

She has weekly private physiotherapy, which costs the family between £300 and £350 a month. They say her movement and posture have improved by 55 per cent since she started in April.

Hydrotherapy runs to between £130 and £150 a session. In water she can move in ways she cannot on land, and the family want regular sessions privately because NHS waiting lists leave long gaps between them.

The appeal, run through the charity Just4Children, set out to raise £20,000. It has passed £23,000 from more than 300 donations.

The golf day was the second annual charity event run by Gavin Griffiths Group, the Llangyfelach recycling and waste firm, hosted by Great Days Golf at Machynys Peninsula Golf Club and Premier Spa in Llanelli.

Players took part in a Texas scramble alongside nearest-the-pin and longest-drive contests, and a challenge to hit a ball into one of the company’s skips. The day finished with a charity auction and a question and answer session with former Wales and British and Irish Lions centre Jonathan Davies.

Gavin Griffiths, the company’s managing director, said: “She is an incredibly brave little girl, and her story has touched everyone across the business.”

He said knowing the money would help her access therapies, equipment and opportunities gave everyone an extra reason to put the effort in, on and off the course, and thanked the golfers, the sponsors and the businesses that donated auction prizes.

Sponsorship came from GAP Alternative Fuels, Recycling Plant & Machinery, Keltruck and Thompsons.

Gavin Griffiths Group has backed local causes before, joining Scarlets players and Santa on a toy delivery to the children’s ward at Glangwili, and the firm secured a £2m loan in June to build a new sorting plant near Swansea.

Liwsi’s appeal is still open, and donations can be made through the Just4Children page.

Author

Swansea Bay News

Reporting from the Swansea Bay News newsroom.