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Gracie at Little Bridge House
Gracie and her family look forward to their stays at Little Bridge House
Like many teenage girls, Gracie loves animals, spending time with her friends, and anything Disney!

But the 16-year-old has also had to overcome huge challenges that most girls her age will never know.

When she was four years old, Gracie was diagnosed with ataxia telangiectasia, a rare inherited progressive disorder that affects the nervous and immune system. There is no cure for her condition, and although she has lost much of her mobility over the years, her parents Martin and Sheryl say their little girl has lost none of her fun-loving spirit.


“Gracie is a very funny, loving, happy, girl,” said Martin, who has been visiting Children’s Hospice South West’s Little Bridge House hospice with Gracie, Sheryl and their older son for a number of years.

“When we started coming to Little Bridge House, Gracie used to run up and down the corridors with her walker but now she’s got no walking ability at all, and no longer has much of an immune system.

“We give her prophylactic antibiotics three days-a-week and an infusion of haemoglobin every fortnight to help her regenerate antibodies. 

“It’s been very difficult during the pandemic as the whole family has had to literally lock down to protect Gracie. We have to be very cautious about things like coughs and colds as they can cause her to have a chest infection.”

The Taunton family look forward to their stays at Little Bridge House in North Devon, where they can take a break from routine and spend quality time together.

“Children’s Hospice South West is an amazing charity," added Martin.

Little Bridge House is a home from home for us, a family-orientated place full of happiness and joy.

“Gracie is able to do whatever she wants to do, nothing is too much trouble. She really enjoys the interaction with the carers and loves spending time making up stories or new animals in the Snoezelen sensory room.

“Our son is 24 years old now but he has also visited Little Bridge House with us; he has had support from the sibs team there and taken part in teenage weekends with other sibs.

“For Sheryl and I, it’s nice for us to not have to worry about Gracie because we know she’s in good hands. We still help with her care while we are there but that’s our choice and we are still able to spend some time together, just the two of us. It’s nice to be able to go off for the morning, do a bit of shopping and have a coffee, just normal things that are a bit difficult to do when we’re all together.”