A CHARITY, which runs a holiday home in North Waltham for seriously-ill children and their families, has secured £235,000 from The Big Lottery Fund.

In its biggest grant to date, Sebastian’s Action Trust was awarded the funds to provide families with practical and emotional help as part of its outreach project.

The money will enable the project to launch, offering hundreds of families, in counties including Hampshire and Berkshire, support in their own homes.

Outreach workers will act as a main point of contact with families, to help advocate through the issues of caring for a sick child both practically and emotionally.

This will include discussions on the financial situation of a family to ensure that they are receiving their full entitlement to welfare benefit, helping them to fill out forms and access support services.

Trained volunteers will provide practical support, such as helping with household chores, offering support for siblings and transportation to hospital.

Sue Murray, from Chineham, understands the benefit the outreach service will have for families with sick children.

Her five-year-old daughter Molly has quadriplegic cerebral palsy and needs special equipment to take a bath or sit still, as she cannot support any weight or walk.

She also struggles with swallowing or chewing because of the condition, which is thought to have originated before or during her birth.

Molly suffers from around 70 seizures every day, and doctors believe she will be wheelchair bound for the rest of her life.

Her parents have fought hard to give Molly the best life possible. Sue said: “Molly needs constant care and attention and it is so time consuming and difficult to find out about and apply for the various help that is out there. We often felt alone and isolated as if we were the only family in this situation.”

She added: “Everything we need is so expensive and NHS funding only goes to the bare minimum of needs. It can be a real battle trying to get the things that Molly needs.

“What people do not appreciate is that when you are caring for a very sick child your attention needs to be on the child and not on big bureaucratic forms.”

The family was helped by Sebastian’s Action Trust, but often had to wait to see a befriender.

Sue said: “This has been difficult as Molly’s needs can change quite quickly. I am thrilled the trust has been awarded this funding as now they will be able to help many more families and provide much more detailed information to parents in situations such as ours.

“They will be able to respond more quickly to distressed families who need someone to talk to when they are in crisis.”

Caroline Holton, fundraising manager at Sebastian's Action Trust, said: “If you have a really ill child, you don’t want to spend hours on the phone filling in bits of paperwork – you want someone to do it for you. Our outreach workers will advocate on their behalf.”