Bedford mum in fundraising plea to help son's rare condition

She plans to set up organisation to raise awareness and support families in similar position
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One mum is doing her bit to raise awareness of a condition so rare, there are only 200 cases worldwide.

Maria Walters is planning to set up a not-for-profit organisation called SATB2 Gene Trust UK - and is raising money to help get it off the ground.

The UK support network will help others in a similar position to the Elstow mum as her son Kai also has the rare condition SATB2 syndrome.

Maria Walters and son KaiMaria Walters and son Kai
Maria Walters and son Kai

She explained that when her son was not hitting any of his milestones as a youngster and his behaviour had become very repetitive, tests showed he had SATB2 syndrome.

It's a condition that affects several body systems and is characterised by intellectual disability, severe speech problems, dental abnormalities, other abnormalities of the head and face and behavioural problems

Maria said: "His condition was so newly diagnosed that no-one really knew much about it apart from the fact that Kai would most probably never talk, he would have learning disabilities and possibly behavioural issues too.

"When he was diagnosed at the age of five, he was one of five known cases. Now in the last three years, that figure has risen to 33 cases in the UK, 200 across the world."

She added that when, Kai, now aged 10 - was first diagnosed, there was very little support.

"The next few months were like being on a roller coaster. The hardest part was the realisation that Kai may never talk. We may never hear him call us mum or dad or tell us he loves us."

So Maria has decided to set up the SATB2 Gene Trust UK to support other families and helps raise awareness of the rare disorder.

"I have already arranged gatherings for families over three years," said Maria - but she wants to do more and hold longer family conferences which could really help parents share information, support and advice.

"I have made it my mission. I don't want people to go through what I went through when Kai was first diagnosed," she added.

"I have truly come to appreciate the smaller things, Kai has taught me determination, compassion, and kindness and now I cannot imagine my life any other way."

To donate to the SATB2 Gene Trust UK Go Fund Me page, visit here

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