Glitzy red carpet music event being held to support Powys youngster with rare condition

A special music event is being held to support a Powys youngster who is living with a rare, life-limiting condition.

12-year-old Carwyn, who lives near Crossgates, has Mohr-Tranebjærg Syndrome (MTS), an ultra-rare degenerative disorder that is steadily taking away his abilities and independence.

A special music night will be held at The Lost Arc in Rhayader on Sunday, November 15, to raise funds for Powys Paediatric Palliative Care and Carwyn’s Fund.

Carwyn has a passion for music, particularly 90s hip hop, R&B, and rap, and has said he wants the evening to be filled with glitz and VIP style.

Funds raised will support a range of essential needs for Carwyn, including deaf-blind sign language lessons, specialist care, communication tools, and mobility and feeding equipment.

The family also hopes to fund accessible music equipment and therapies to help Carwyn express himself for as long as possible.

His mother, Gemma Jones, said: "Watching my beautiful, courageous son Carwyn lose his abilities and independence, knowing he is in pain and frightened of what may be taken next, is a type of heartbreak no parent can prepare for.

"When I was informed he would be under a community palliative team, I resisted.

"The word is hard to hear when it's paired to your child.

"But their steady, compassionate care has been the rock that kept us going."

Carwyn's form of MTS is progressing rapidly. It has already taken his hearing and his speech, changed his cognitive abilities, and made chewing and swallowing foods difficult.

His fine motor skills are now limited, and he uses his electric wheelchair most of the time. He can only walk or run a short distance before head tremors and spasms unbalance him and it becomes too painful.

Vision loss has now begun, and further decline is expected.

Ms Jones said their palliative nurse has had a profound influence on the family.

She said: "Our palliative nurse is our anchor, which is why Carwyn asked to raise money for her department as well as his own GoFundMe page.

"'Other children may need a Giovanna,' he said, 'and they might be scared like me.

“We want to say a huge thank you to everyone organising the event. Carwyn is so excited, he has just been trying on his VIP suit ready for the evening. A massive thank you to everyone, it all means so much.”

The fundraiser event will feature Carwyn's favourite old skool hip hop and 90'S R and B classic tunes and it will begin at 5pm and will feature DJ Wikid and live performances including Len on live saxophone and maybe even a performance from Carwyn himself.

The red carpet will be rolled out for the night, so polish off those dancing shoes, shine up your bling and dress to impress for the ultimate night to remember!

The event will raise much needed funds for Powys Paediatric Palliative Care and Carwyn’s Fund.

Tickets £5 or give what you can – extra donations gratefully received on the night and there will be

wood-fired pizza and snacks available throughout the night.

A spokesperson for the event said: "Through spending time with him it has been clear that music and beats are something he can still feel and connect to and at The Lost Arc we have been supporting him by helping with music tech equipment so he can enjoy his love of music as much as possible given his difficulties."

Carwyn’s GoFundMe page which has so far raised over £4,700 describes him as "kind-hearted, funny and endlessly inspiring" who loves music, animals, sports cars and a good practical joke.

It says; “Carwyn's courage and determination inspire everyone around him. His smile, his cheeky humour and his ability to connect deeply with people make him one in a million, and we feel so fortunate to have him in our lives.

“Every contribution, whatever the size, means more than we can say.”