Fundraiser launched to bring hope for one-year-old with ‘devastating’ illness

Nation Cymru staff

A north Wales family are racing against time to save their baby son from a rare and life-threatening illness – with the family clinging on to hope for potential treatment in the United States.

Rupert, from Penymynydd in Flintshire, has Alternating Hemiplegia of Childhood (AHC), a genetic neurological disorder which affects only about one in a million children.

The condition causes seizures, paralysis-type episodes and breathing difficulties and has already led to emergency hospital admissions.

A cuddly toy, dubbed Mickey the Monkey, has become the latest fundraiser for one-year-old Rupert Smith whose parents are trying to raise £1.5 million to fund research into his devastating illness and access potential treatment.

The raffle has been launched by Mario and Gill Kreft, owners of the Pendine Park care organisation, who hope the loveable chimp will help boost Rupert’s Rainbow – the appeal set up by police sergeant Dave Smith and his wife Siobhan.

The couple, who have two other sons, Henry and George, say the lives of the whole family have been transformed since Rupert’s condition was diagnosed.

In 2024 Dave was awarded a British Empire Medal for services to the community after he helped raised a total of more than £60,000 for a range of charity campaigns.

But now he and Siobhan have found themselves having to head up the biggest fundraiser of their lives – for their own son.

On their online Just Giving Rupert’s Rainbow charity appeal page Dave explains: “As a result of this diagnosis, Rupert will require ongoing investigations, close monitoring, and lifelong full time specialist care.

“There has been little research in the UK, however there are developments in the USA, with a treatment and cure currently being developed in Boston.”

The Rupert’s Rainbow fund has two aims – to boost research into potential treatments and a cure for AHC, plus providing financial support for Rupert and his family who would almost certainly have to travel to America for treatment should it become available.

Most of the research being done is in the USA which means. that in the event of a treatment being discovered, the family must be prepared and able to take Rupert there at short notice.

Funds raised so far stand at £330,000 which has been achieved through Just Giving donations and more traditional campaigning activities.

Dave said: “I’m incredibly grateful to Mario, Gill, the care home managers and everyone at Pendine Park for supporting Rupert’s Rainbow.

“Their generosity and willingness to get involved means a great deal to our family and to everyone who has supported the appeal.

“It’s wonderful to see the Pendine Park community coming together in this way, and we are deeply touched that they have chosen to support Rupert’s Rainbow through their fundraising efforts.”

As part of the fundraising drive, Mickey will be visiting all of Pendine’s homes, including Bodlondeb, Penybryn, Bryn Bella, Highfield, Cae Bryn, Hillbury and Gwern Alyn in Wrexham, along with Bryn Seiont Newydd in Caernarfon.

Ann Chapman, the manager of Pendine’s Bodlondeb care home, said: “When we all heard about Rupert’s plight we simply could not stand by and do nothing.

“No-one should have to see their baby son suffer in this way and so as a management team we decided that we must do something positive to help.

“Mickey will spend some time in each of the Pendine care homes in Wrexham and there will be a mini-competition between us to see which home can sell the most raffle tickets and raise the most funds.

“We’re making it a fun, fun, fun raffle but with a serious goal – to do all we can for Rupert and his family.

Rupert’s Rainbow is such a deserving cause that anyone who can do should get fully behind it.”

Bodlondeb resident Ann Singer said: “Mickey the Monkey is a real sweetheart, just look at his smile!”

Mario added: “I think Mickey the Monkey is completely magical. Gill and I both love him and we’re sure that whoever eventually wins this raffle will fall head over heels in love with him too.”

The raffle tickets will be on sale to staff, residents, their families, neighbours and all friends of Pendine Park.

People can also organise their own charity events in aid of Rupert, donate directly to the fundraiser or help via the online appeal at Rupert’s Rainbow Just Giving page at https://www.justgiving.com/crowdfunding/ruperts-rainbowahc