Our trio of Family Support Workers – Emma, Melissa and Cheryl – have been called ‘Fairy Godmothers’ by the families they help because they aim to make wishes come true.
“I say to families, just give me a call and we’ll do what we can to help,” says Melissa. “We can’t change their child’s condition or the family’s situation, and we're not clinically trained to provide care, but we can help to relieve some of their stresses and create joyful moments.”
Lucy, mum of two-year-old Sully, says, “Emma helps our family in so many ways – she’s a saint! I was really nervous about taking Sully to a little playgroup near me, so Emma walked with me from my house to the group and stayed with me. Now I go by myself, and Sully thrives and loves it there. I’ve met other mums who have children that need extra support, and we can relate to each other, so it’s made me feel a lot less isolated as well.”
For other families, their wishes might be for a weekend away, and this is something that the team often organise. Around 40 families enjoyed stays at the Julia’s House caravan in the New Forest last year, and other holidays were gifted to families, all thanks to kind supporters.
When Lucy and Jake got married earlier this year, they had a ‘family honeymoon’ in the caravan with both their boys, Sully and big brother Reuben.
“When I told Emma the date of our wedding, she surprised us and booked the Julia’s House caravan for a whole week for our honeymoon. I cried when she told me; it was such a lovely gift.”
Gemma, mum of three-year-old Alfie, says, “We won a week’s holiday to Scotland through Julia’s House. It was absolutely stunning; it was just the most perfect week forgetting the stresses of home and making memories together.”
Emma says, “Recently, I also arranged for a family to stay in the most magical Lord of the Rings-inspired shire house in Wiltshire. It was generously gifted to us by the owners. And thanks to food donations, I was able to fill up the fridge for when the family arrived. It was a magical experience for their child, and such a lovely moment for the whole
family to remember.”
Throughout the year, the Family Support Services team also organise around 80 events. Here, children, young people and families have a chance to make friends, socialise and do some of the things that other families experience but can be so much harder for them when they're caring for a seriously ill child.
The activities range from overnight trips, pottery workshops and sports car experiences for mums and dads, to Santa visits and social gatherings that bring together the whole family. This summer’s Family Garden Party at Little Durnford Manor saw a record number of 213 family members attend!
Their practical support is also crucial. Last year, the family support team secured 140 grants totalling £135,500 for families. This could be spent on sky-high electricity bills or life-enhancing equipment, such as an accessible spa bath to soothe the skin of a teenager with paralysis.
Gemma says, “Melissa applied to a charity called Family Fund, so we could have a mobility car that could get us to hospital and fit all of Alfie’s equipment inside. I didn’t even know the funding existed. Alfie can have hundreds of seizures a day, so that car has been our security at a time when life’s not secure.
“It’s amazing to have Melissa’s help because it can be a logistical nightmare trying to get the funding you need. She fights for Alfie to make sure he gets the right support. It means I can put my time and effort into looking after Alfie, rather than being sat on the end of a phone.”
Melissa says, "It can take hours to complete a Disability Living Allowance Form. It's too time consuming and emotional for parents to do that – they're exhausted, they’ve got so many hospital appointments. We help draft and submit the forms and persevere until they get what they’re entitled to.
“And when we’re successful, it's such a hurrah moment! I’d like to say it’s the best feeling in the world.”
- Melissa was interviewed by Together for Short Lives as one of their nominated ‘Hospice Week Heroes.’ Watch her film at youtube.com/@juliashousechildrenshospice
