Can you help Noah, 3, get to USA for rare genetic condition conference?
PUBLISHED: 07:00 06 March 2019
(C)2016 Jeremy Long / JCLPhotography, all rights reserved
The family of a ‘kind’ and ‘popular’ three-year-old boy are searching for thousands of pounds to be able to find out more about his ‘uncertain future’.
Noah Locke, from Clevedon, was born three weeks premature with a congenital heart defect and a missing part of his eighth chromosome – a rare defect with fewer than 100 registered cases worldwide.
The birth defect means Noah has limited speech and experiences severe delays in development.
Noah’s mum, Aimee, and her husband Andy Locke are looking to fundraising £3,000 to help them go to New York for a conference to find out more about the syndrome.
Noah would take part in research where some of his skin cells will be taken and analysed in order to help his family better understand his diagnosis.
Aimee said: “We cannot afford it on our own. The money would help us with the flights and accommodation out there so we can see what Noah’s future holds.
“Noah is just lush. Everyone loves him. He is a very affectionate little boy and very popular.
“Whenever someone asks me about him, I just say ‘Noah is being Noah’, he is a hyper-active, on the go, popular and kind little boy. It would be ideal to get over to New York and meet other kids like Noah.
“His future is uncertain, we don’t know if he will be able to go to school without the one-to-one help, if he will be able to live independently.”
Aimee and Andy noticed something was wrong with Noah when he didn’t smile as quickly as other babies his age.
She added: “We were told to take him to a paediatrician where they ran some tests and found he was missing a small part of his eighth chromosome.”
The condition, known only as 8p deletion syndrome, can result in heart defects, sight problems and diabetes in later life.
Noah has little to no spatial and safety awareness and struggles with communicating.
“When we first found out about Noah, I cried. We thought if we could find out what was wrong that would be good but it hasn’t helped because it is so rare we still don’t know what it means.”
To donate to Noah’s cause, visit their GoFundMe page.
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