Corby dad’s skydive raises £1,300 for children's charity

A Corby man has taken to the skies to raise £1,300 for Rainbow Trust Children’s Charity, which supports families with seriously ill children, including his daughter Lola-Mae.

Jason Lizars and his wife Katie from Corby, Northamptonshire have received emotional support from Rainbow Trust Family Support Worker, Sammii, since March after their 22-month-old daughter was diagnosed with GAND Syndrome.

Lola-Mae’s condition is extremely rare; her father says it is believed that fewer than 400 people in the world have been diagnosed with it. GAND syndrome is an enlarged head which can lead to heart and feeding issues.

Lola-Mae experiences developmental delays so it is unlikely that she will be able to walk or talk as she develops.

Lola-Mae is also currently PEG fed and may not be able to orally feed in the future. She has a narrowed heart valve and a hole in her heart, so will be closely monitored with scans every six months and may require surgery when she is older.

Jason decided to raise money for Rainbow Trust Children’s Charity because of the help and support Sammii has provided.

Jason said: “I wanted to do something to help someone else, which hopefully we’ve done as a family.

“Katie pushed the fundraising on Facebook and social media, I’m the one who jumped out the plane!

“As soon as I got in the plane I had quite a buzz and was really looking forward to it. It was amazing, I absolutely loved it.”

Rainbow Trust has nine care teams of Family Support Workers across England, including Reading, providing emotional and practical support to families at home, in hospital and in the community.

Family Support Worker Sammii from the Reading team has been providing emotional support to the family over the phone as part of Rainbow Trust’s online support programme for families living outside the area.

Doctors do not know what the future holds for Lola-Mae and being able to confide in Sammi has helped them come to terms with her diagnosis.

Jason said: "Lola may not walk, talk or attend a mainstream school, there are lots of unanswered questions still. Me and Katie struggle some days, and some days are good. The fact that she’ll always be delayed in learning and may never talk and walk is heartbreaking.

“Just having Sammii to talk to, you can relax a bit and get stuff off your chest. Somebody to release to.

“I always remember the first time we had a video call with Sammii and she said ‘don’t worry about swearing or saying anything’ which is good because stuff does build up and it gets very frustrating. I mean you have good days and bad days. This week has not been a bad week, but a tiring week.”

Recently, Lola-Mae has started to sit up independently.

“For us that is massive progress as we’ve always had to support her sitting up. The age she is at now, she should be virtually running around and us struggling to keep up with her.”

“As a family, it is time-consuming. Katie is with Lola 24/7. I am lucky I go to work and get a bit of a reprieve from it but she is always on our minds.

“We are always wondering if we will get a call and she must be admitted to hospital. We have to remain aware and vigilant of fits and seizures because Lola may or may not have them due to the effect on her head. We need to be aware, we don’t know how to manage them as so far she has not had any, but it is something we may need to do nearer the time.”

Jason is now aspiring to Wing Walk to raise more money for Rainbow Trust Children’s Charity.

He said: “I want to do the wing walking, you sit or stand up on aeroplane wings and are strapped to them whilst the aeroplane does loop the loop and things like that.

“I must be mad at the minute, but that keeps me going, thinking of other stuff like that to help!”

When a child suffers from serious illness, time becomes more precious than ever. Rainbow Trust helps by pairing each family with a specialist Family Support Worker who gives them time: Time for a parent to have a desperately needed break; time for the brothers and sisters to help them feel less frightened and isolated; and time for parents to do the things they used to love, before family life was turned upside down. Every hour of Rainbow Trust’s support helps families to cope.

Oonagh Goodman, Director of Fundraising and Marketing at Rainbow Trust, said: “We are incredibly grateful to Jason for taking to the sky for Rainbow Trust. The money he has raised means that we can continue to support families to make the most of the precious time they have together.”

Currently marking its 37th anniversary, Rainbow Trust is a national charity supporting families who have a child with a life-threatening or terminal illness.

According to a 2020 study by the University of York, There are an estimated 86,000 children in England with life-limiting or life-threatening conditions. Thousands of families have to face the very real possibility that their child may die and struggle to cope on a day-to-day basis. Rainbow Trust’s Family Support Workers provide a lifeline to these families and children.

To find out more information about Rainbow Trust visit their website.