When young Alfie and his family visit Tŷ Gobaith for respite breaks together, they feel a great sense of relief.

In December 2021 the family of five’s life was turned upside down when their middle son, Alfie, was diagnosed with a very rare genetic condition that has since left him without speech or use of his limbs.

He now communicates by blinking and moving his eyes.

His parents, Rachael and Colin said: “At first we were a bit nervous about staying at the hospice.

“But, the kids absolutely adore it and the staff are wonderful, the sibling support is an amazing help.

“It gives us more time to spend together knowing that all of Alfie’s needs are being taken care of.

“It takes some pressure off and we can relax a little.”

We cried a lot

Alfie’s journey began when a speech and language specialist at his school noticed a rapid decline in his work.

This led him to be referred to hospital for tests and scans.

Doctors there were very concerned and from there he was admitted to Alder Hey where he spent nine days.

Rachael continued: “It turned our life upside down.

“We cried a lot to begin with, but we’ve just had to toughen up and adapt our lives to get on with it.

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

“He used to bound through the door and say ‘hi, babes’ – I miss that terribly.”

Alfie does the real battle

Both Rachael and Colin are still working and along with support from Tŷ Gobaith and community nursing teams, are managing to keep all three of their children in school, despite the radical changes in arrangements at their Colwyn Bay home.

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

“We are fighting every day for his needs, but he is the one doing the real battle.”

William and Noah, the couple’s two other children have both recently been confirmed as carrying the same gene that causes Alfie’s condition but it may not present in the cerebral form that Alfie lives with.

Fun family event

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

The Dark Run takes place on the evening of Saturday 22^nd October and is a 5km jog, walk, skip or push along the scenic coast path and towards Conwy’s iconic castle which will be especially lit-up for the occasion.

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

They will be both officially starting and taking part in the event along with Alfie in his special wheelchair.

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

“We are really looking forward to it and it got a smile from Alfie when we told him what we are doing.”

Our fundraiser and Dark Run Conwy organising team member Vanessa Marubbi, said: “We are thrilled to be bringing one of our flagship events to beautiful Conwy.

“It’s our first Dark Run on this site and we hope as many people as possible will join us for some fun and exercise – plus all competitors will get a brilliant glow in the dark medal.

“We would like to say a special thank you to our sponsors Conwy Town Council, Llandudno Lions, Bone & Payne Solicitors, Fletcher & Poole Estate Agents and Lanyon Bowdler Solicitors.”

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

Entrants are encouraged to raise as much money as possible to help seriously ill local children and their families.

There is also a Dark Run at Chirk Castle on the same night and Telford Town Park on the 29th - sign up here and here respectively.