Colwyn Bay family rally for charity event in support of sick son

A family who have been struck by their nine-year-old son’s loss of mobility and speech have come forward to raise awareness of his condition and help support a local children’s hospice.

In December 2021, nine-year-old otherwise healthy Alfie Lovelady was diagnosed with the rare genetic condition X-linked adrenoleukodystrophy (XALD), which affects the adrenal glands.

The rare inherited disease damages the membrane (myelin sheath) that insulates nerve cells from the brain, and the wasting disease causes progressive loss of physical and cognitive abilities.

Despite therapy and treatment, there is no cure.

Since February, young Alfie has rapidly lost the use of his limbs and his ability to speak, now communicating through blinking and eye movement.

Colin, Alfie, Chase the dog and Rachel at their home in Colwyn Bay.Alfie Lovelady being treated at her home in Colwyn Bay.

As well as support from community nursing teams, parents Rachael and Colin Lovelady accessed family respite services at Tŷ Gobaith in the Conwy Valley with Alfie and their two other children, William, 12, and Noah, 4 year.

They say the support they receive from staff is invaluable and benefits their family life immensely.

Rachael, who works at Ysgol Eirias, said: “It was after a speech therapy teacher at Alfie’s school, Nant Y Groes, noticed a big drop in his work over the year that we were referred for tests and scans at the hospital.

“I remember getting the phone call asking us to come over immediately, so I left work and took Alfie there while Colin sorted the other two boys home.

“A team of specialists told us we needed to go straight to Alder Hey Children’s Hospital as they suspected XALD.”

Colin, Alfie, Chase the dog and Rachel at their home in Colwyn Bay.Noah, Rachel, Alfie, William and Colin.

Father Colin, a Morrisons baker, said: “At the time we thought we could cope and we wanted to stay at home.

“We fight for him every day, but he’s the real fight.”

In April, the boy’s uncle, Neil Lovelady, helped organize a fight event to raise awareness of the disease, shine the spotlight on Alfie and raise money for charity, and a fundraising page was soon up and running. created in Alfie’s name to fund his equipment and help. create memories.

Rachael continued: “It turned our lives upside down.

“We cried a lot at first, but we just had to toughen up and adapt our lives to keep going.

“The hardest thing for me is not hearing him speak – I haven’t heard his voice for five months.

“He used to walk in the door and say ‘hi, girls’ – I miss that terribly.”

Colin, Alfie, Chase the dog and Rachel at their home in Colwyn Bay.William, Alfie, Noah along with Rachel and Colin spend time at Tŷ Gobaith.

The Lovelady family will be special guests at this year’s Dark Run Conwy, a fun, family-friendly fundraising event hosted by Hope House Tŷ Gobaith.

The Dark Run takes place on the evening of Saturday 22nd October and consists of a 5km jog, walk, jump or push along the scenic Coastal Path and towards the iconic Conwy Castle which will be specially illuminated for the occasion.

Participants are encouraged to wear neon or even spooky Halloween costumes and there will be a group warm-up before departure.

Both parents will officially start and participate in the event with Alfie in his special wheelchair.

Colin has been an avid runner for many years, but Rachael joked, “It will be more of a walk for me.

“But we’re really looking forward to it and it made Alfie smile when we told him what we were doing.”

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Vanessa Marubbi, Tŷ Gobaith fundraiser and member of the Dark Run Conwy organizing team, said: “We are delighted to be bringing one of our signature events to the beautiful town of Conwy.

“This is our first Dark Run on this site and we hope as many people as possible will join us for fun and exercise. In addition, all participants will receive a shiny phosphorescent medal.

“Special thanks to our sponsors Conwy Town Council, Llandudno Lions, Bone & Payne Solicitors, Fletcher & Poole Estate Agents and Lanyon Bowdler Solicitors.”

Rachael and Colin bravely continue their work and, with the support of Tŷ Gobaith and the community nursing teams, manage to keep their three children in school despite drastic changes in the arrangements at their Colwyn Bay home.

Colin said: “Alfie is sleeping downstairs so one of us is always on the couch to be with him.

“We fight every day for his needs, but he’s the one fighting the real fight.”

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The couple’s other two children also carry the same gene that causes Alfie’s disease, but it may not be in the brain form that Alfie lives with, with eldest son William now at less risk in because of his age.

Register for the Dark Run here for just £10 per adult and £5 per child (under 16).

Participants are encouraged to raise as much money as possible to help critically ill local children and their families, with an official warm-up before the event held at the RSPB reserve and each competitor to receive a glow-in-the-dark medal.

X-linked adrenoleukodystrophy (XALD) is a rare condition that affects 1 in 18,000 children, but can often present with symptoms such as speech or behavior problems. It is even rarer for the “cerebral” form of the disease, like Alfie’s, to manifest.

To donate on Alfie’s fundraising page, click here.

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