Friends of Crawley are climbing Snowdonia to help raise money for a four-year-old boy with a rare genetic disease.

Charlotte Richardson, 35, and Shannon Cook, 29, will take on the challenge in February 2024 to help friends Emma and Lee Scaife organize their home, to help look after their son Archer.

Archer was born with a rare genetic condition called CHARGE syndrome – CHARGE stands for Coloboma of the eyes, Heart defects, Atresia of the choanae, stunted growth and development, and malformation of the Ears and Deafness.

The pattern of maladjustment varies between individuals with this disorder, and many health problems can be life-threatening in infancy. Affected individuals often have multiple major symptoms or a combination of major and minor symptoms.

And so Emma and Lee, who have a two-year-old daughter called Arabella, have to reorganize their home to make it safe and accessible for Archer and easier for them to care for. And Charlotte and Shannon are hoping to raise £2,000 from their Snowdonia trip to help them achieve this. On their GoFundMe page, they have already raised £1,160 in total.

In the paper, Charlotte, who has been friends with Emma and Lee for 18 years, said: “After the birth he was moved from East Surrey to GOSH where he was cared for from birth and had several operations as he took everything. his journey.

“However, Emma and Lee then had to balance home life with Arabella, work and after six months they were allowed to bring their beautiful boy home but Emma and Lee’s lives had to be balanced a lot because then they became parents/carers.
“And what comes with having a child with complex medical needs, even though Archer is growing and growing and getting stronger, they have to adapt their home which comes at a huge cost, which no parent should have to deal with. So from our trip and permission from Emma and Lee I’m hoping to raise money to be able to to help the orientation of the Arters at home.”

Emma and Lee currently have to carry Archer up and down the stairs several times every day, which is taking a toll on their physical health.

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Modifications required include having a fully wheelchair accessible downstairs bedroom and a wet room designed for Archer with ceiling track hoists. This will be done through an extension from the current property to the family garden.

They live on the corner of a nearby house so they have to carry Archer to and from the car so the current garage they have at the back of the property will be demolished and a hard surface built so Archer can be brought in easily. to and from the car you pass through the back of the house.

The estimated cost of the work is quoted at around £100K and the local council will only be able to help the family through a disability grant but this grant only covers about 60% of the work, the rest is left to the family to pay for later. to get the job done.

Charlotte said: “Emma and I have just had a chat about how things are going with Archer and what’s going on with the house renovation and endless brunch, she told me the incredible cost of everything and I couldn’t believe how much work was needed to have a safe and affordable home in – Archer.

“Shannon and I have been talking about going through Snowdonia next year and we booked it last week then I remembered back to my conversation I had last month with Emma and after talking to Shannon we were both happy to raise the money.”

They are now a one-income family because Emma has had to quit her traveling job of 14 years to become Archer’s full-time carer.

Planning permission has been granted and the family are ready to continue with Arters’ renovations to create the safe space she needs and to bring her big sister back to her bedroom which she has shared and been disturbed many nights over the past two years.

You can find more information and donate to Archer’s home adaptation on the GoFundMe page at https://www.gofundme.com/f/archers-home-adaption