Mum starts petition to get newborns tested for daughter’s genetic condition

PUBLISHED: 07:28 11 February 2019 | UPDATED: 08:09 11 February 2019

Cerys, 18, and Tracey Hennighan is starting a petition to get the blood test for 22q routinely done for young babies. Picture: DANNY LOO

Cerys, 18, and Tracey Hennighan is starting a petition to get the blood test for 22q routinely done for young babies. Picture: DANNY LOO

©2019 Archant

A mum who is originally from Stevenage has started a petition to get a blood test for the genetic condition that her teenage daughter is diagnosed with given to newborn babies.

Tracey Hennighan’s daughter Cerys has 22q11.2 deletion syndrome – known as 22q – which causes her ongoing physical and emotional health problems.

Her mum Tracey has started the petition online to get the test given to newborns at the same time they are given the Guthrie test, which detects other conditions – and she already has more than 1,200 signatures.

She told the Comet: “Cerys has been let down by society, people think it’s getting easier for people with disabilities, but in our experience it is not. So I want people to sign this petition to raise awareness.

“Cerys is 18 now, and she wants to build a career for herself working with animals, but she couldn’t stay at college because she couldn’t handle the full days. She has chronic fatigue and other health problems to do with her 22q which mean she couldn’t handle the full days.

“We did ask if she could do the one year course over two years but the college couldn’t comprehend that.

Cerys volunteers at Shepreth Wildlife Park, Rabbits Residence Rescue in Chrishall and goes to Penniwells riding centre in Elstree because she loves working with animals, and wants to do it as a career, but I believe she has been let down by society. Opportunities and apprenticeships aren’t designed for people with disabilities like hers.

She needs to be building employability skills so she’s got half a chance like everyone else.

“The petition won’t help Cerys now, but it will hopefully stop others from having to go through what she has been through, because she wasn’t diagnosed until she was four, and there is not the same awareness that there is for other genetic disorders out there.

“Her late diagnosis has impacted on her self esteem, language, social, emotional, mental health and life chances.

“Everyday is an awareness day for us. I have known about this condition for 14 years, and I will volunteer information at any opportunity.”

“When i see petitions online I always sign them because that cause is important to someone, and this is so important to us so we just want to get the message out there.”

Click here to sign the petition

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