Community that cares
A fund set up by the parents of a little girl with a debilitating muscle disease is nearing £40,000.
Mr and Mrs Simon Foat, of Main Road, Long Bennington, set up the Lily Grace Trust Fund just a few months after their daughter, Lily (6) was diagnosed with ullrich congenital muscular dystrophy in March, 2005.
The little-known disease is caused by a deficiency of the protein collagen VI, causing weakness in the muscles.
Although Lily began walking at around 21 months she is no longer able to walk independently as her body has become too heavy for her weakening muscles.
It will eventually put a strain on her lungs which could lead to chest infections.
Since hearing the news that their daughter was suffering from the life-limiting disease the couple have worked tirelessly to ensure she is given everything she needs to cope.
Mrs Liz Foat (33) said their efforts with the trust made them feel like they were doing something to help their daughter.
“The amount of support and donations we have received has been quite overwhelming.
“It helps us as well — it makes you realise that everybody is there for us.”
A year ago the couple moved Lily and her younger brother, Mackenzie (4) to a new house that could be fully adapted to her needs.
The family’s new home, which is just across the road from the cottage where they used to live, was the house of Mrs Foat’s parents, Mr and Mrs Ralph Marris, who now live in Claypole.
An extension has been built to provide Lily with a large bedroom and her own bathroom, both decorated in pink.
The rooms have been specially built with Lily’s needs in mind and include hoists and tracking fitted on the ceilings and a separate heating system to keep her muscles warm.
A hydrotherapy bath has been installed, along with a wheel-in shower, a specially adapted toilet, a drop-down changing table and taps fitted with sensors to allow Lily to wash her hands herself.
A lift goes up from the ground floor straight into Lily’s bedroom on the first floor.
The lift alone cost £10,000 and the wheelchair that she relies upon to get around cost a further £6,000.
Alterations to the family car to allow for a ramp so Lily can get into it came to £8,000.
Money from social services has helped towards the costs, but the family have had to find the rest of the money.
Mr Simon Foat (33) said every penny they raised had gone towards buying equipment for Lily.
But despite their efforts the couple have recently been told that Lily has entered the second stage of the disease and developed scoliosis, a curvature of the spine.
“The disease is a horrible thing which we can’t stop,” said Mr Foat.
“We can give her all the love in the world but we can’t cure her. Hopefully one day they will cure it so no other couples will have to go through what we’ve been through.”
However, Lily, a pupil at Long Bennington Primary School, has not allowed the disease to faze her.
Mrs Foat said: “When she’s out of her chair you wouldn’t know she had a problem.
“She is absolutely brilliant. She never complains or moans, although she does get a little bit frustrated when she can’t do things.
“She is involved in Rainbows and ballet after school and is part of the recorder group.”
Mrs Foat said Lily was doing very well at the school, which has also been fitted with special equipment, such as ceiling hoists, paid for by Lincolnshire County Council.
Lily is able to attend full time and receives one-to-one support. She is also visited by a physiotherapist every day to give her massages.
One of the effects of the disease is tightening of the muscles, known as contractures, with movement of limbs and joints becoming difficult. Physiotherapy stretches the tendons and muscles helping to slow down this process and prolong movement.
Mrs Foat said Lily was popular with her peers at school.
“All the school children think she is brilliant. They don’t see Lily in a wheelchair, they just see Lily,” she said.
Their neighbours have also provided valuable support.
“It is good living in a village because we have the community support around us,” said Mrs Foat.
“There’s not so much for us to do because everybody is asking if they can do things.”
The family are now looking ahead to more fundraising events, which will include the Lily Grace Golf Association’s annual event and a dinner dance in Liverpool.
The Long Bennington village fete is another project the Foats have been involved with and the Lily Grace Trust is one of four charities helped by the event.
To donate to the trust or find out more information about Lily visit www.lilygracetrust.org.uk.
