Daily Mirror (Northern Ireland)
Our little gem Amber is brave princess with a rare disease
DOTING mum-of-four Chantelle Cammack was left devastated in April last year when her young daughter was diagnosed with a rare genetic disorder.
Amber Bowling, 12, received her diagnosis of CLN2 Batten disease just two months after Chantelle,
33, found out her eldest son Sheyne, 14, also had it.
Full-time mum Chantelle, who lives in Sheffield, says discovering Amber also had the life-limiting condition was a “massive shock”.
Chantelle, who also has sons Mason, eight, and Cruz, five, says: “Amber was going through an autism diagnosis, but when Sheyne got his result back I wondered if she had the condition so sent off her DNA to be checked.
“When it came back positive for Batten disease I was devastated.”
Children can have worsening problems with vision, movement, communication as well as seizures.
“It is the cruellest disease,” says Chantelle. “Amber isn’t able to walk much, 10 steps a day, and it causes her a lot of pain.
“Her eyesight is stable but when things deteriorate with the condition it can happen quickly.
“We take each day as it comes. The kids have to be so strong at such a young age. I try not to let Batten disease rule our lives.”
Now, after Make-a-wish UK provided Sheyne with specialist sensory equipment last June, Amber has asked the charity, supported this year by the Mirror Christmas Appeal, to make her a princess for the day.
“Amber is a really girly girl, so this wish is her all over,” says her mum. “It’s amazing the Mirror is supporting Make-a-wish and raising awareness.”