Bolton: Families of boys with genetic conditions overwhelmed

Eddie Pearson who lives with his family in Little Lever has cystinosis, which forms crystals in many of the body’s organs.

The condition means that Eddie has a severely poor immune system and has to be fed through a gastrostomy button so that he is able to get the nutrients he needs.

Little Teddy Walsh from Westhoughton is only 15 months old and has a condition known as GRIN2D.

• ALSO READ: Fundraiser to support youngsters with rare conditions

This means that Teddy has epilepsy, seizures, developmental delay, visual impairment, and feeding problems, resulting in him being fed by a tube. 

Amy Devlin, Eddie Pearson, and Bradley Pearson (Image: Jamie McLaren)

And close family friend of both families, Jamie McLaren has organised a music gig which is fast approaching – being a singer song writer himself.

The music event is aimed at helping raise as much money alongside a JustGiving page which has raised £4,797.

Amy Devlin, Eddie’s mum said: “It’s amazing that family and friends and people who we don’t know have donated.

“It’s overwhelming how much has been raised and I didn’t think it would so big.

“There are so many hidden costs.

“Even though me and Bradley both work, when we have to stay in hospital we have to cover meal fees and parking, as well as loss of earnings when in hospital.

“It’s really tiring because since we found out in September, we haven’t had a full sleep because of needing to get up in the night.

“He has started nursery again and is loving it.

Michelle Walsh, Rick and Teddy (Image: Michelle Walsh)

“Little Gems in Swinton held his place for him and stopped us paying when he was ill.

“He’s been through so much and still smiles no matter what.”

Teddy Walsh’s mum Michelle says that it is incredible that the amount has exceeded the target even before the fundraising event.

She also says that this money will also help to cover any future costs of any equipment they may need later down the line.

Michelle said: “It will help us buy much needed equipment which will make his life easier.

“It means that we will have a pocket of money that can help pay towards additional bits we may need, which will make him a bit more independent.

“It’s been challenging but we have a lot of support around us.

“Everything he has been through is just absolutely formidable.”

Both families are looking forward to being in a space that will bring them together for a good cause.

Jamie has organised the event with his wife Donna, and he has got a large group of his singer/songwriter friends together, as well as his daughter Maizie who will perform.

Those who will be performing will also include himself local artists Tommy Govern, Will Edgar, Resident Redneck, and Luke Holding.

He said: “It’s just incredible and I am so humbled because the generosity from the public and local businesses, and it has been absolutely beautiful to receive.

“It takes my breath away, especially in this day and age when money is tight for people.

“It breaks my heart when I see the two little boys so poorly because I have known Teddy’s mum Michelle since she was three and I think Eddie’s dad Bradley since he was about two.”

Proceeds from the event will also go towards helping the families, which will include a raffle, cake sales, and funds from the tickets.

Huge amounts of raffle prizes have also been donated by local businesses, including a meal voucher for Nick’s Restaurant in Horwich; Wagamama’s voucher for Middlebrook; drinks from Brew Tap in Westhoughton; ArmCandi in Westhoughton; Indie’s attic; Thyme for Tea; and many more.

The sold-out music gig will be held on Saturday April 29 at the Masonic Hall Bolton which was provided free of charge as a gesture of goodwill.

To support the fundraising efforts click here (www.justgiving.com/crowdfunding/jamiemclaren?).

If you have a story and something you would like to highlight in the community, please email me at jasmine.jackson@newsquest.co.uk or DM me on Twitter @JournoJasmine.