30th Anniversary feature – Kerry Anne Moore

Kerry Anne, now 36, has Rett syndrome, a rare genetic disorder that affects brain development and occurs in about 1 in 12,000 girls born each year. Symptoms can vary from child to child and at first there is often no indication that anything is wrong.

“When Kerry was around a year old, she went to bed and when I went to get her up in the morning she had completely changed overnight,” says Anne.
“She stopped crawling, had difficulty feeding and then later her motor skills started to regress, and she lost her speech. I struggled to get a diagnosis and she was on all kinds of drugs, spending time in hospital on the high dependency unit.”

It was during this time that a friend of Anne’s saw a programme on Granada TV about a young girl with seemingly similar symptoms and told Anne to watch the repeat programme later that night.

“I watched it and realised that Kerry had Rett syndrome. I went to Newcastle to get a diagnosis and finally at six years of age it was confirmed.”

Kerry began to have seizures so severe that Anne feared she wouldn’t survive. Following a referral to Francis House she first came for respite in 1996 at ten years-of-age.

A happy place

Anne says: “I didn’t know anything about Francis House, but we were welcomed as soon as we arrived. I immediately felt it was a very happy place and the staff were great. In all the years we have been coming they have helped me a lot, I don’t know what I would have done without them.”

Living just a short ten-minute drive from the hospice, Anne hasn’t stayed for respite herself, but Kerry’s sister Hayley and her friends have all enjoyed many years of care.

There is no cut off age at Francis House with young people in their twenties and early thirties who still enjoy coming and spending time with the people they care about.

“Kerry likes going to Francis House, although a number of staff have now retired, the staff there know her, and they know wat she likes and doesn’t like. It’s a break for both of us and I feel she is safe at Francis House.”

Almost three decades of support

“When you have a child with a life-limiting condition you have to trust the people you leave them with. I put my trust in Francis House and I have peace of mind that she’ll be safe when she’s there.”

For thirty years Anne has worked part-time as a phlebotomist at Wythenshawe Hospital, taking Kerry to day care in the morning and collecting her after work to continue to meet her needs.

“There is no cure for Rett syndrome, but Kerry is stable now and her condition has plateaued. She has stayed well and especially after having a gastrostomy when she was fourteen years old.

“We need support and Kerry needs 24-hour care but when she goes to Francis House for respite, she gets that care as well as a complete change of scenery and enjoys trips out with the care team. I’m thankful for having Francis House in my life for all of these years.”