THE FAMILY of a three-year-old Disney superfan who died last summer from an extremely rare condition are looking to carry on his memory by raising funds for the charities which supported him.

Fynley Thomas, from Brynmawr, died on June 8 last year, from a condition associated with PIGQ (Phosphatidylinositol N-acetylglucosaminyltransferase subunit Q).

His grandmother, Maria Williams, set up Fynley's Paint & Play last autumn. While the group has been unable to meet due to coronavirus restrictions, they have formed a knit and natter group in collaboration with Rachel Paulsen, the co founder of Happy Cafe – making blankets and baby clothes for children at Noah's Ark Children's Hospital and Tŷ Hafan Children's Hospice.


“We’re trying to raise awareness of the disease he died from,” said Ms Williams. “It was only after he passed we found out what his disease was.

“Everything I want to do now is in Fynley’s name. It helps me with my grief.

“I would like to give something back to them for everything they have done for Fynley and for my family.

Maria Williams with grandson Fynley. Picture - Maria Williams

“Through lockdown, we’ve been doing the ‘knit and natter’ group. The act of joining together to knit and natter has had a massive positive effect on people's confidence, stress levels and general wellbeing.

“The micro-grant that we received has provided us with the ability to expand this idea by purchasing wool, knitting looms and other equipment for those who struggle with using knitting needles.

“We intend to run regular knit and natter groups from the studio when it's safe to do, encouraging the community to come together to knit blankets and little baby clothes so they can be donated to the Neonatal Intensive Care Unit at Noah's Ark Children's Hospital and Tŷ Hafan Children's Hospice.

Rachel Paulsen, the co-founder of Happy Cafe, holding knitted donations. Picture - Maria Williams

“We thought it would be so nice to make these things for the children there.

“The hospice hasn’t been able to accept any of what we have made as gifts at the moment because of Covid.”

Fynley’s family have also been making and selling herbal melts to raise funds for the charities.

Maria Williams

“My sister started selling melts a few months ago,” said Ms Williams. “She told me how smells could remind people of memories.

“Green is his colour, and he was a massive Disney fan, so they look like Disney characters and they all smell of things that remind me of him.

Melts made to raise money in memory of Fynley Thomas. Picture - Maria Williams

“The scents of mint and lavender are amazing together - they remind me of Fynley in his happy place, enjoying his walk through the rustling trees at the hospice with sun shining through the leaves and listening to the roaring sea in the background.

“All the profit is going to be donated equally between the two charities who cared for our Fynley - Tŷ Hafan Children's Hospice and The Noah's Ark Charity.”