Hartley Wintney’s dad raises money for Rainbow Trust

A Hartley Wintney father-of-two whose sixteen-month-old daughter has been diagnosed with a terminal illness is raising awareness and funds for a charity that supports his family.

Steve Wright shares his experiences with Rainbow Trust Children’s Charity ahead of Father’s Day to raise money for the charity.

Steve and his wife Beth have received Rainbow Trust support since August 2021 after their daughter Olivia was diagnosed with a rare genetic condition known as ALG6-CDG when she was just 12 weeks old.

Doctors told Steve and Beth the devastating news that Olivia’s estimated life expectancy was just two years.

Steve said: “We first knew something was wrong when Olivia lost interest in her feeds at five weeks old. When she began to lose weight, she was admitted to Frimley Park Hospital before being rushed to Southampton General where she remained for almost four months to undergo a series of tests. Eventually, they diagnosed Olivia with a very rare congenital genetic condition that affects her entire body.

“The diagnosis was incredibly difficult for us to accept – the doctors estimated that she could only live to be two years old, which is only eight months away. But you see her now and the most of the time he is a very happy and playful baby.

Olivier. Photo credit: Jessica Sharp Photography

Rainbow Trust began supporting Steve and his family after being referred to the charity by Southampton General staff.

Since July, Nicki Phelan, their Rainbow Trust Family Worker, has been providing vital emotional and practical support to the family in every way possible, to ease some of the pressures placed on them by having a critically ill child.

Steve said: “If we didn’t have Nicki’s support things would be a lot more difficult. Everyone has full-time jobs, so they’re not able to help as much. But Nicki can hang out with us and she understands what we’re going through.

“Nicki’s visits make a huge difference to us. It’s easy to take adult interaction for granted, but when I’m at work, Beth is often at home with just Olivia for company. When Nicki is around, she listens and provides Beth with emotional support. She takes care of Olivia or lets her nap on top of her, so Beth can shower or do chores around the house, knowing Olivia is safe.

“Nicki also helps with our many appointments by driving us to the hospital, which can be stressful. It would be very difficult for me to keep my job if I had to be constantly at home to take Beth and Olivia to all her appointments. It’s a huge relief for me when we have a “Nicki day” because I know Beth has the support she needs while I’m at work. It’s also nice to know that I have Nicki to whom talk if I need to – I’ve found that emotional support for dads like me is rare to find, so Nicki’s understanding and compassion is a very valuable resource.

Basingstoke Gazette: Beth, Steve and Olivia.  Photo credit: Jessica Sharp PhotographyBeth, Steve and Olivia. Photo credit: Jessica Sharp Photography

Steve said Nicki supports her family by taking their stress off at least for a few hours.

He said: “Beth and I are both suffering from a mental health perspective, just from the pressure it puts on us to care for Olivia and her grim prognosis. Daily life is a very strict and complicated medical routine and we are limited to how far we can walk comfortably and when we need to be home.

“Although Nicki can’t help with medical care, she really supports us by taking away so much stress from the day and giving us an extra pair of hands for a few hours.”

Basingstoke Gazette: Steve with his daughter Olivia.  Photo credit: Jessica Sharp PhotographySteve with his daughter Olivia. Photo credit: Jessica Sharp Photography

The family welcomed their new baby, George, into the family in May and are enjoying adjusting to family life of four. The new baby has been a very happy addition to their home, despite the ongoing challenges of caring for a critically ill child while caring for a newborn.

Steve is now calling on members of the public to support Rainbow Trust this Father’s Day to help the charity continue to provide a lifeline to other families like his.

Steve said: “I urge anyone looking to donate to charity to remember Rainbow Trust. It’s been such a great support to my family in these extremely difficult times and Nicki will continue to support us too long as we need his help.

Oonagh Goodman, Fundraising Director at Rainbow Trust Children’s Charity, said: ‘I am so grateful to Steve for bravely allowing us to share his experiences this Father’s Day. It costs Rainbow Trust just £26 to provide one hour of specialist support to a family in desperate need.

“If you are able, please consider making a donation to help us support families who have a child with a life-threatening illness to provide expert practical and emotional support, where they need it, for as long as they need it. than necessary.”

Rainbow Trust supports families who have a child with a life-threatening or terminal illness. When a child is seriously ill, family life is disrupted and time becomes more precious than ever. Rainbow Trust matches each family with an expert family support worker who enables them to make the most of their time together, providing practical and emotional support, whenever they need it, for as long as needed. The Covid-19 pandemic has put unimaginable pressure on these parents and children, and the charity’s family support workers continue to provide a lifeline.

To donate to Rainbow Trust, visit rainbowtrust.org.uk/donate or text RAINBOW followed by your donation amount to 70490 to donate that amount. SMS will cost the donation amount plus one message at the standard network rate.

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