'Their condition made them the brothers I love'
New UK|December 04, 2023
Carer Sarah Walker, 39, from Northwich, Cheshire, pays tribute to the siblings she says have taught her what matters most in life
KATE SKELTON
'Their condition made them the brothers I love'

Sarah has dedicated herself to looking after her older brother Dan, 40, and younger brother Sam, who died from sepsis in 2019 aged 28.

Both were born with the genetic X-linked condition ATRX. Dan has learning disabilities, is non-verbal, uses a wheelchair and needs 24-hour support.

Here, Sarah tells us her responsibilities left her doubting she'd ever find The One...

'Growing up as the middle sibling to two brothers with profound and multiple learning disabilities has made me the person I am.

I was nearly seven when Sam was born and I loved him from the moment I met him. I was always scooping him up and giving him cuddles. Many parents experience grief when they have a disabled child but I didn't see any negatives - he was my perfect baby brother.

Unable to find any toddler groups suitable for disabled children and their siblings, my parents created their own. This meant I grew up surrounded by a high proportion of families with at least one disabled child.

I SAW HIM AS MY BABY

Dan is older than me, so disability has always been a part of my life. But Sam was younger than me and I always felt a maternal connection to him and saw him as "my baby". This continued throughout adult life too. Sam was always very small - he was only 4st when he died and the size of an eight-year-old. People often mistook me for his mum and I'd say, "I hope that's because he looks younger than he is, not because I look old!"

Even as a young child I was always so proud of my brothers. When Dan was supported to attend mainstream school aged nine, professionals were reluctant to let him go into my class, but I couldn't understand why they thought I wouldn't want him there. I loved introducing him to everyone.

Diese Geschichte stammt aus der December 04, 2023-Ausgabe von New UK.

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Diese Geschichte stammt aus der December 04, 2023-Ausgabe von New UK.

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