Parents to take on skydive to thank charity for helping their son
PUBLISHED: 07:56 06 August 2019 | UPDATED: 07:56 06 August 2019
The parents of a boy with a rare genetic condition are taking part in a skydive to raise money for Springboard Opportunity Group.
Katie Ward and Martin Rees, from Portishead, are hoping to raise £600 for the charity which has supported their son Archie who suffers from speech and mobilty problems due to his condition.
Archie has KAT6A - an extremely rare condition which affects the development of the brain and central nervous system.
Archie is one of 17 people in the country with the condition and there are only 155 people with KAT6A worldwide.
His mum Katie said: "The condition was only detected in 2015 so he spent a year with doctors not knowing what was wrong. He was constantly in and out of hospital.
"He has mobility problems and he's tube-fed at the moment.
"It also affects his speech so he's non verbal.
"Before he started at Springboard he couldn't sit up and now he's walking with a frame."
Archie, aged four, started Baytree School in Weston in September, but he is still receiving support from Springboard Opportunity Group.
The charity, which is based in Clevedon, supports children from birth to 5 years with additional needs and disabilities, and their families.
Katie said: "Springboard has still been supporting him for the past year.
"They have been helping us to access the right help and support and they also provide emotional support for parents.
"They've been amazing."
Katie and Martin are taking part in a skydive on August 24 in Swindon to raise as much money as they can for the charity which has been a huge support to Archie.
Katie has never done a parachute jump before, but she is looking forward to the challenge.
She added: "I'm really excited. I want to give something back because it's been so amazing.
"This charity is very close to my heart as the staff have helped and supported Archie for four years.
"It also doesn't get a lot of Government funding so they really struggle."
To sponsor Katie, log on to www.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=KatieWard30&pageUrl=3
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