THE FAMILY of a little girl with a life-threatening illness have thanked Sebastian’s Action Trust for their ongoing support during the coronavirus pandemic.
Four-year-old Nancy Rockell recently left hospital after having emergency open heart surgery.
As a baby, she was diagnosed with Heterotaxy syndrome, a rare condition that affects the heart and other organs.
And over the four years she has had ten operations, the most recent at Evelina London Children’s Hospital.
Despite the coronavirus crisis, the Rockell family have said they feel just as supported by Sebastian’s Action Trust as they always have been — especially during Nancy’s most recent surgery.
They have praised the Crowthorne-based respite charity for helping them cope with their daughter’s diagnosis.
Kirsty Rockell, Nancy’s mother said: “We are far more supported by the charity than by anybody else. They get it, they’re amazing. They’re doing everything they can at this uncertain time.
“There have been regular phone calls to and fro. When Nancy was in hospital she was isolated away from the ward, she was very poorly.
“I dropped a text to Sebastian’s and soon after I had my outreach worker calling me, this was at 7:30pm at night, so not office hours. They go above and beyond.”
The family have also been receiving support for their eldest child, Oscar.
The six-year-old has been struggling with anxiety surrounding his sister’s illness and has one-to-one support from the charity.
Mrs Rockell said: “Claudia, Oscar’s key-worker has sent him a personalised activity pack with things they used to work on in school together.
“She’s been in regular contact and has always said she’s available for a call or video chat.
“She used to go and spend time with Oscar once a week in school — the difference in him is incredible.”
She added: “Everybody has been amazing, the whole team. There’s a real sense of family, it doesn’t matter what role, everyone gets involved, they are incredible.
“They’re still doing as much as they can at the moment. It’s an uncertain time but we’re all in the same boat.”
Usually, Sebastian’s Action Trust provides outreach and specialist support at The Woodlands centre in Crowthorne, one of their two facilities aimed at reducing isolation and helping families.
Some of the centre’s facilities include a sensory room, cinema and garden. But The Woodlands has temporarily closed its doors, and all respite breaks, day visits, events and activities have been cancelled for the foreseeable future.
Mrs Rockell said: “Nancy was born without a spleen and is immuno-compromised, so catching a cold could be life threatening.
“Playing at the park, with children running around and coughing, it’s worrying.
“At The Woodlands, we don’t have to worry as we’re all aware of each other’s children. You know you’re in a safe boat, no one will think I’m being neurotic about hand-washing.”
Since the centre’s closure, Nancy and Oscar have been desperate to return, pestering their mum about playing at the park.
Due to new social distancing measures, the charity is finding new ways to support its vulnerable families.
Now, they have launched an online fundraising campaign to provide emergency supply packs to families of seriously ill children.
Each emergency support pack costs approximately £40 and includes items such as bread, milk, eggs, tinned foods, toiletries and baby care products including nappies and wipes.
Jane Gates OBE, Sebastian’s Action Trust CEO, said: “We know that everyone’s lives have been affected by the Coronavirus pandemic, but if you can give anything, your donation will help us bring emergency provisions to our vulnerable families.
“As we cannot initiate our own fundraising efforts at this time, we are entirely dependent upon the generosity of our supporters to help us finance the emergency support we are giving. Sebastian’s Action Trust is still at work, supporting vulnerable families each and every day.”
Sebastian’s Action Trust is appealing for support to help fund emergency support packs to help keep families safe and nourished.
To donate, visit: https://www.justgiving.com/campaign/SATstillworking
For more information about the charity, contact info@sebastiansactiontrust.org
