Goring man raising money for Chestnut Tree Hospice through skydive

Luke Tate, 27, from Goring, will be braving the height to raise money for Chestnut Tree House, the children's hospice caring for his daughter.

Maisy-Leigh, six, suffers from an extremely rare genetic condition that is set to cut her life short.

In 2015, Luke’s wife, Hayleigh had an emergency C-section and just managed to catch a glimpse of Maisy-Leigh before she was taken to the high dependency unit.

Hayleigh, 29, said: “It was total whirlwind from there. Maisy-Leigh was in critical care for almost four months, and we were told she had a number of complex conditions which would affect her brain, vision and coordination.

Luke, Hayleigh and Maisy-Leigh when she was born

"Doctors also noticed her ears were set low on her face, she had a wide nose bridge, and quite a lot of hair on her face and back – all symptoms of something called Coffin-Siris syndrome.

"The condition is so rare that there’s only 200 known cases, so when she was diagnosed, we couldn’t believe what was happening."

Things changed when Maisy-Leigh was one-year-old, and the family visited the hospice for the first time.

Hayleigh added: “For Maisy-Leigh, Chestnut Tree House is somewhere where she can have fun, laugh, and do things that any other child can do. But we can do normal things together as a family too."

Luke, Hayleigh and Maisey-Leigh

“Often, it’s not until we see the stars hanging on the doors at Chestnut, which let people know that a child has died, that we remember why Maisy-Leigh has a place there.

"Knowing that your child will pass away before you is every parent’s nightmare, but we’re so grateful that she is still here and still smiling. She’s our biggest inspiration.”

On Sunday, March 16, Luke will be completing his skydive, he said: "I want to raise money for Chestnut Tree House to thank them for all they do for Maisy-Leigh and our family.

Maisey-Leigh at Chestnut Tree House

"They give us the time and the strength we need to carry on and we’d be lost without them.”

Luke has set himself a fundraising target of £1,000 for his skydive. To sponsor Luke, please visit www.justgiving.com/fundraising/luke-x-hayleigh-tate