Crawley friends climbing Snowdonia to help raise money for four-year-old with a rare genetic disorder

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

Archer was born with a rare genetic condition called CHARGE syndrome – CHARGE stands for Coloboma of the eye, Heart defects, Atresia of the choanae, restriction of growth and development, and Ear abnormalities and deafness.

The pattern of malformations varies among individuals with this disorder, and the multiple health problems can be life-threatening in infancy. Affected individuals usually have several major characteristics or a combination of major and minor characteristics.

And with this Emma and Lee, who also have a seven-year-old daughter called Arabella need to adapt their home to make it safe and accessible for Archer and also easier on them to care for him. And Charlotte and Shannon hope to raise £2,000 from their Snowdonia trek to help them achieve this. On their GoFundMe page, they have already raised £1,160 towards the total.

On the page, Charlotte, who has been friends with Emma and Lee for 18 years, said: “After birth he was transferred from East Surrey to GOSH where they cared for him from newborn and with multiple operations which as he does took it all in his stride.

"However Emma and Lee then had to balance life at home with Arabella, work and after six months they we’re allowed to bring their beautiful boy home but Emma and Lee’s lives had to massively adapted because they then became medical parents/carers.“And what comes with having a child with complex medical needs, even though Archer is absolutely thriving and getting bigger and stronger, they also have to adapt their home which comes at a massive cost, which no parent should have to deal with. So from our walk and permission from Emma and Lee I’m hoping to raise funds to be able to help towards Archers adaptations at home.”

Emma and Lee are currently having to carry Archer up and down the stairs multiple times daily, which is having a toll on their physical health.

The adaptions required include having a fully wheelchair accessible downstairs bedroom and wet room created for Archer with ceiling track hoists. This is to be created by an extension extending out from the current property in to the family garden.

They also live in a corner house of a close so are having to carry Archer to and from the car therefore a current garage they have at the back of the property is going to be knocked down and a hard stand built so Archer can be easily brought to and from the car via the back of the house.

The approximate cost of this work has been quoted around £100K the local council will only be able to help the family through the disabled facilities grant but this grant only covers approximately 60% of the work, the rest is down to the family to then pay for the work to be completed.

Charlotte said: “Me and Emma have recently had conversations on how things are with Archer and what was happening with the house adaptions and over a bottomless brunch, she told me the staggering cost of it all and I couldn't believe how much work was required for them to just have a safe and accessible home for Archer.

"Myself and Shannon always talked about walking Snowdonia next year and booked it last week and then I remembered back to my conversation I had the month before hand with Emma and after speaking to Shannon we we're both excited to raise money for them.”

They are currently a one income family due to Emma having to resign from her travel career of 14 years to become a full time parent carer for Archer.

Planning permission has been granted and the family are ready to proceed with Archers adaptions to create the safe space he needs and also to give his big sister back her bedroom which she has shared and been disturbed many a nights for the last two years.

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