Justice loves cuddles, having a full tummy and her dummy - just like all babies do.

But she is now a year old and still like a newborn.

She was born with an underdeveloped brain, caused by the Cytomegalo Virus (CMV), which mum Kayleigh contracted during pregnancy.

Normally harmless with symptoms similar to flu or food poisoning, it can have devastating effects on an unborn child. 

Kayleigh and her partner Luke, have two older children, Angel and Brooklyn, together and were overjoyed when Kayleigh became pregnant again. 

But the virus robbed Justice of so much. She will never speak, or walk. She has microcephaly, a medical condition in which the brain does not develop properly, a detached retina, optic nerve damage and is profoundly deaf. She also has cerebral palsy and global development delay.

“Justice will always be a baby. But she was brought to us this way and every day we have with her brings us happiness," said Kayleigh.

The family communicate with her through touch and have picked up on all her little ways. They feel Justice has brought many positives to their lives.

Kayleigh found inspiration and support from other mothers of special needs children and numerous care specialists and decided to set up a group to help parents of children affected by CMV and increase understanding of how dangerous the virus can be in pregnancy.

“I’d never heard of CMV and felt totally on my own,” she said. “I wrote a Facebook post and two mothers in the same situation got in touch. We set up CMV Awareness UK in July 2019 and now have 400 members.”

Justice was nine months old when her family came to Bluebell Wood Children’s Hospice for support.

“It took us too long to come,” said Kayleigh. “We were offered a respite place within weeks of Justice’s birth, but I knew a little girl in our village had died at the hospice and I felt it was like admitting Justice was going to die, too.

“But on our very first visit I realised how wrong I had been and that we should have accepted the hospice’s help sooner.

“We went as a family, had our tea there and were shown around by Mandy, one of the nicest ladies I’ve ever met. Everyone made us feel at home.”

Since then the family has visited a number of times, Justice has had short daytime stays and the care team has offered to support Justice at home too.

Kayleigh said: “We now know the hospice as a place where we can offload our fears and worries and be with other families in similar situations.

“We don’t know what the future holds and how long Justice will be with us. We are very realistic about her future, but we live in hope and believe in her ability to keep fighting through things.

“Bluebell Wood is now an extension of the family, friends and medical carers who support us.”

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