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Created by Kelly and Mark Stokes, who founded the forAva Foundation, they are given to children in hospital isolation and their families to help them through one of the most difficult times in their lives.
Says Kelly: “Even with support, trying to keep a child entertained for weeks in isolation is really hard.
“Our hope is that the Be There Box will help to bring a little joy and be a light in one of the darkest times; and it will let families know that other people know what they are going through and that they care.”
Mum-of-two Kelly, 41, and husband Mark, from Ormskirk, know what it’s like to have a sick child. Their daughter Ava, now seven, has battled through different forms of cancer and, thankfully, ‘come through the other side’.
When she was 19 months old, Ava was diagnosed with liver cancer and underwent chemotherapy before it was clear she needed a life-saving liver transplant.
“She tackled it head on which made it easier for me and Mark to deal with,” admits Kelly, who also has a son, Alex, 10. “She never moaned or cried, and took whatever the doctors threw at her to make her better.
“If it were me, I would have crawled into a ball and hoped it would go away. We were devastated but Ava was amazing.”
Not even when she was diagnosed with leukaemia – a rare side-effect of the chemo she had been given – in May 2016, did Ava once give up.
She underwent six weeks of intense chemo at Alder Hey Children’s Hospital before doctors agreed she had reached the threshold of what they could give her, and a bone marrow transplant was needed.
Ava had a ‘mis-matched’ cord blood transplant at Manchester Children’s Hospital in the hope that ‘donor’ cells would attack and kill the leukaemia cells. Thankfully, the treatment worked.
Ava suffers lasting effects from both treatments, including chronic kidney disease skin issues, a respiratory condition and hearing loss, for which she needs regularly monitoring, but they are manageable, and she is now in continuing remission from the liver cancer and the leukaemia.
But it wasn’t just the actual treatment that made it ‘a pretty horrific time’ for Ava in particular, and for the rest of the family.
Kelly, a former family lawyer, explains: “Ava had had a period of isolation when she had her liver transplant and then, when she underwent her bone marrow transplant, she had to be isolated for seven weeks. Only myself, Mark and my mum were allowed to go in to see her. Her brother Alex could see her until a week before, but then not until her blood counts had started to recover about five weeks later, other than through a window.
“The day they saw each other again was the most joyful day – the hug they gave one another gives me a lump in my throat even now!
“It was hard. And trying to keep a child entertained and distracted from their treatments, while making sure they are stimulated, is really difficult. The play therapists are great but they only have so much time and resources.
“Although we are now a family trying to carry as what is our new normal – Ava is doing well in school, she does gymnastics and Rainbows, and both she and Alex swim – we had always wanted to give something back for the care Ava had been given and for the support we had received. That’s where the boxes come in.
“When the law firm I worked for folded and I was made redundant, we set up the forAva Foundation which creates and gives out the Be There Boxes for children in isolation during bone marrow transplants.
“We came up with the idea after discussions with the nurses and play specialists, and we take them into the hospital when the transplant process starts.
“They contain toys, cards, games, PJs and socks, all things which parents can give out during the weeks of isolation, or which the child can delve in and out of. There is also a voucher for parents so they can just go off and not worry about their own finances and treat themselves to a nice coffee and a cake. We were given a Costa voucher when Ava was in, it was just lovely to have that break.
“And there is a voucher for siblings and a special gift for another child if they’re the donor.”
People can help to support the boxes by giving donations to the Ava Foundation, or by providing stock items like crayons, pads, socks, cards and board games. Although Kelly is keen to stress that each box is personal.
“We create a box after a referral from the bone marrow nurses from Alder Hey and Manchester, and either myself, Mark or my mum will get something the child has especially said they’d like and I put a hand-written note in every one.
“I can’t tell you the joy it gives us as a family when we go and deliver a box, personally depending on how a child is, and the feedback is unbelievable. Parents will say their child hasn’t smiled for a week until they opened the box, or someone hadn’t got out of bed until the box arrived and that is lovely to know.
“We want families to know that we are thinking about them, especially those who don’t have the support that we did.
“We want to offer hope, to say we’ve been where you are and look where we are now.
“And we want to bring a bit of light to the darkest times, and to make things just a little bit better.”
By Jan Tansley, Copy Media
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