Twins celebrate birthday at hospice

Twins Taylor and Brooke Hulme knew exactly how they wanted to spend their eighth birthday – at the children's hospice with the people who care for them.

The sisters, who turned eight this week, decided to celebrate their special day at Charlton Farm in Wraxall with their family, friends and members of the care team who look after them.

Taylor and Brooke, who live in Hengrove, Bristol, were diagnosed two years ago with a rare genetic disorder called Nemaline Myopathy.

The life-limiting condition is a muscle wasting disease which means they will gradually lose muscle tone and have progressive weakness in limbs and trunk muscles.

The twins, who are staying at the hospice for four days, enjoyed a party tea on Monday night with care staff, their Grandma Jane Chiddy and her partner Nigel Booth, mum Louise and their four-year-brother Owen as well as other friends and family.

To make the celebrations even more special, the twins handed over a cheque for £1,400 to the charity, Children's Hospice South West which runs the hospice.

The money was raised by Jane and Nigel who organised a number of money-spinning events at the Dundry Inn, Dundry, which they run.

They set up the Taylor and Brooke (TAB) Fund and over the past several years have raised thousands of pounds, including £9,000 for the Bristol Children's Hospital.

This is the twins' fourth visit to the hospice since they started using it for respite breaks last summer.

Taylor and Brooke, who attend Perry Court School in Hengrove, said: "We love coming to the hospice and really like the Jacuzzi, games room and art room.

"We had a cake for our birthday but we had to blow the candles out and sing Happy Birthday quickly because we wanted to eat it.

"We have lots of friends here, have lots of fun and love coming to stay."

The pair, who have adjoining bedrooms, had lots of presents including a computer and also went to see LazyTown at the Bristol Hippodrome as part of their birthday celebrations.

Grandma Jane said: "The girls have had a fantastic birthday.

"Given the choice, they just wanted to come down to the hospice and be with their friends, which I think is fantastic.

"Charlton Farm is a godsend to us as a family as it is a real home from home and the girls love staying here on their own.

"It also allows my daughter Louise to take a much-needed break.

"Charlton Farm does so much for the girls and for us as a family that we wanted to raise money to be able to give something back as a way of saying thank you.

"We will not stop fundraising and we have several events in the pipeline."

Mum Louise, 25, has also been busy while her daughters have been away.

She has been decorating the dining room at home to turn it into a computer room as a surprise for the girls when they return.

Children's Hospice South West, which opened its first hospice, Little Bridge House, in North Devon 13 years ago, opened Charlton Farm in April 2007.

The hospice relies on donations and fundraising to meet its running costs.

The charity needs to raise around £6 million each year to run both hospices.