3,000 families of terminally ill children to be given heartfelt support thanks to Kentown Wizard Foundation

The lives of these parents are thrown into turmoil as they must face the very real possibility that their beloved son or daughter might die, and while they dedicate their every waking hour to the care of their child, it can be easy for their own mental wellbeing to be overlooked.

That’s where a new care team run by the Rainbow Trust Children’s Charity comes in, thanks to the Blackpool-based Kentown Wizard Foundation.

A generous £575,000 donation from the Foundation means the charity has been able to expand its existing care teams to Liverpool, where such support for struggling parents and guardians was previously unavailable.

Margaret Ingram, CEO of the Kentown Wizard Foundation,said: “The Rainbow Trust is a charity we know well and hold in high regard. The support they currently offer across the country is a lifeline to many, who without it would be left feeling more isolated than ever.

“This grant will enable the charity to extend its reach and provide valuable support to many more families in the North West of England and Wales. It is support like this, offered to families often feeling overwhelmed by their circumstances, that makes a real and significant difference to their lives.”

Previously, the Rainbow Trust’s existing North West care team has only been able to provide support in Liverpool when families are staying in Alder Hey Hospital for their child’s treatment.

The new service means support will now be offered to people living in the city and the surrounding region, where an estimated 3,000 families are caring for a child with a life-limiting illness.

Among these is Olena Veitaite, whose seven-month-old daughter, Pola Gapska, was treated in Alder Hey Hospital in January.

Pola was born in June 2021 with Downs syndrome and a hole in her heart, and doctors told Olena and herpartner Michael Gapski that she would need life-saving heart surgery at six months .

Olena said: “As she was put to sleep, we gave her a kiss and were told the operation would take six hours. But by 5pm after hearing nothing we were told the doctor wanted to speak to us.

“The doctor explained the operation had been very complicated and Pola had had difficulty breathing because of pulmonary consolidation, meaning there was some blood in her lungs. She had to spend ten days in intensive care, initially with an open chest and on breathing machines. It was incredibly hard.

“On January 27 she opened her eyes – it was amazing and we cried constantly with joy. Gradually she became stronger and the tubes were taken out of her belly and step by step she was getting better.”

Since September 2021 the family has been supported by a Rainbow Trust family support worker, Brodie Stockwell, after being referred to the charity by the hospital.

Olena said: “I think I would have gone crazy without Brodie. At first, she helped me with travel to the hospital, but her support became so much more than just picking me up and dropping me off. I could ask her advice, I could speak openly with her and share all my worries. Over time we became more and more comfortable with Brodie and now she feels like a part of the family.

“When we were in hospital Brodie would accompany me on the ward as only one parent was allowed because of Covid-19. I was sleeping at the hospital and only swapping with Michael so that I could eat meals. It was exhausting and having Brodie was such a support.

“As we opened our front door carrying Pola, Michael and I looked at each other and started crying with happiness and relief. We were so thankful that we were coming home with our baby.

“We love Pola so much and throughout it all Michael and I have always tried to keep positive and Brodie has been such a help.”

She added: “For families living in Liverpool with a really ill child, the Rainbow Trust’s new family support workers will be such great help. I think any families should not be scared to ask for support, it is not shameful to show that you need extra help. For us, the Rainbow Trust have given us more strength so we can be strong for our baby.”

Rainbow Trust chief executive Zillah Bingley said: “For several years we have been aware that there are a number of families in desperate need for the type of support Rainbow Trust provides in and around Liverpool. Rainbow Trust has supported families attending Alder Hey for treatment, like Pola’s family, but until now we have not been able to fund a new team in the area.

“Thanks to the incredibly generous donation from The Kentown Wizard Foundation this is now a reality. We look forward to working alongside the existing palliative organisations in the region to ensure that our new team can complement the existing support and together make sure that families receive the full care they require.”

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