Sebastian’s Action Trust

“Their support gets us through”

Sandra Hackett, 25 from Berkshire, explains how Sebastian’s Action Trust has been a lifeline in the care of her son, Eli, 7

We knew something serious was wrong with Eli because he had been so poorly since birth, but getting the full diagnosis was devastating. Eli was diagnosed with 1p36 deletion syndrome, a genetic condition that causes birth defects as well as intellectual disabilities of varying degrees. Finding out things might not improve, or could get worse for him was difficult to take in.

With his dad, Damien, working shifts as a 999 emergency call handler and medical dispatcher, and not being a driver myself, I worried about getting to the numerous medical appointments with Eli, as well as fitting in all the usual day-to-day household chores.

Thankfully, another family at the hospital mentioned that Sebastian’s Action Trust might be able to help. They had told us how the trust had supported them with the logistics of having a child with disabilities so I applied to see if they could help us. The charity only takes on families whose child has a life-limiting or life-threatening condition. Being accepted was the best thing that’s happened to us and gave us hope during a very difficult time. Knowing there was someone with the knowledge to help and advise us was extremely reassuring.

Right from the start they offered lots of practical help. They take Eli and I to his appointments in their wheelchair-friendly vehicle and a staff member accompanies us to help if Eli gets upset, as he tends to do if we have to wait for any length of time. They also help me with food shopping as it’s difficult to manage with the wheelchair.

Children with disabilities are often excluded from mainstream events because they can become overwhelmed or there’s no space for their wheelchair. Through the trust we’ve been invited to Halloween and Christmas parties, which are so important for Eli’s self-confidence.

Every year the charity offers a pamper day as a treat for mums. You can have your nails done or enjoy a soothing massage and I really look forward to this precious “me time”.

Sebastian’s Action Trust also provides regular ‘chill and chat’ evenings, where mums and dads can discuss their worries with other parents.

Another crucial service it offers is help with paperwork, which is useful when parents need to complete DLA forms and apply for grants – it’s quite a task if you have to work it all out by yourself. For years, Damian and I tried to get social care to help us with Eli, and it was a nightmare until Sebastian’s Action Trust chased it all up for us. We were eventually offered a care package of eight hours a week – two four-hour sessions, which really helps us to cope with Eli’s needs at home. The carers help me to shower and change him as I struggle to do it by myself. I can also get a bit of housework done while they are here with him, which is an absolute godsend!

We’ve also been lucky enough to stay at The Bluebells – Sebastian’s Action Trust’s holiday home – in North Waltham, Hampshire, twice, which is so generous considering the charity supports a huge number of families.

Our circumstances mean it’s difficult for us to spend quality time together as a family but The Bluebells is purpose-built to accommodate a child with special needs. The swimming pool has lovely warm water and a hoist so we can enjoy it together. There’s a cinema room, an arts and crafts room, beautiful gardens and plenty of space to enjoy one another’s company. Each family has their own apartment that can accommodate eight people – last time we were there we took my aunt and two of my cousins. Eli spent time with his cousin making arts and crafts and they played on the swings and enjoyed the pool, something they could never do at home. The apartment is fully equipped with everything you need to enjoy a few days away in the country.

Eli is currently non-verbal but is able to ‘bum shuffle’. Developmentally he’s around 12-18 months and we can communicate really well with hand gestures. He can eat chewable food or semi-solid food but not puréed food or liquids as he has a fear of being sick, which is probably linked to him being so poorly when he was younger. Despite all the challenges he faces, he’s a happy boy and enjoys music, swimming and watching fast cars. He attends Arbour Vale School in Slough, which he loves and has lots of friends. At school, he uses a supportive walking frame for around 45 minutes a day. We hope that he may walk unaided one day but nothing is guaranteed.

As for me – I’ve started singing in a choir once a week and I love it. It’s fabulous to do something for myself now Eli’s health is on a fairly even keel. Damien and I are getting married in September and we’ve invited some of the good friends we’ve made at Sebastian’s Action Trust. I’ve had a few health problems myself and they have come to visit me in hospital – they aren’t just there for your child, they see your needs as a parent too. I’ve been inspired by the work they do at the trust and hope to volunteer at the local Home Start Centre in the future. My dream job would involve working with children and I’d be delighted to be able to help other families with children with extra needs. It’s challenging having a child like Eli who will always have the mental age of a small child, but with help, support and love and patience, we treasure the special moments
and feel blessed to have him in our lives.

TOTAL RAISED: £28,174

Sebastian’s Action Trust – THE FACTS

  • Sebastian’s Action Trust supports families and individuals, where there is a young person aged 0-19 with a life-limiting condition or families who have lost a child, sibling or grandchild.
  • The Trust offers respite holiday breaks to families throughout the UK including 100 family respite breaks, 40 crisis breaks and 500 family day visits at The Bluebells.
  • Their services are offered to those based in the south-east, principally from Berkshire, Surrey, Hampshire, Buckinghamshire and Oxfordshire.
  • For more information visit sebastiansactiontrust.org.

BIG GIVE UPDATE

Money raised will be used to provide respite holidays for families at The Bluebells – two fully equipped family apartments within a complex that offer fantastic leisure facilities suitable for everyone.

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