Burnham-On-Sea Freemasons have this week given a town couple a funding boost to help them seek crucial medical treatment for their baby, who has a rare condition that has left him blind.
When Koby Hoff was born seven months ago he was struggling to breathe and it’s feared that he may have suffered brain damage.
The couple, Kayleigh Hoff and Jake Davis, are hoping that a MRI scan will rule out cerebral palsy or brain damage.
This week, Burnham-On-Sea Freemasons presented the couple with £300 towards the costs of the scan and further treatment.
Kayleigh told Burnham-On-Sea.com: “When he was born, Koby was struggling to breathe and he was rushed into intensive care where he was on 95% oxygen through machines with just 5% coming from him breathing.”
“He was treated and they then found cataracts in both his eyes. At five weeks old he had his first operation but he failed to develop sight from that.”
“They also found Glaucoma in his left eye and he’s recently had an operation for that.”
Kayleigh adds: “Koby is behind on development and we’re struggling to wean him because of it. It’s not been easy.”
“It’s so hard to settle him – he often seems to be in a lot of pain at night. He’s showing a lot of other health issues too.”
“He has been diagnosed with duplication of chromosome 11 which causes a lot of physio problems and he could never walk or talk.”
“He is registered blind because of his lack of sight but he has contact lenses in, and we are hoping that something will develop, but they just don’t know until he gets older.”
“The chromosome is so rare that they don’t have any information on it. We don’t really know what the future holds for him. We are in the middle of finding out whether it’s something genetic.”
“The MRI scan will hopefully rule out a lot of things to put our minds at ease.”
Kayleigh added: “The funding will be used for an MRI scan to hopefully rule out cerebral palsy or brain damage. When he was born he was struggling to breathe and lacked the oxygen – they do think there could be something there but we just don’t know.”
“If that fails, then we will seek private treatment for genetic testing to find out if there’s anything the chromosome causes, but it’s a long haul.”
John Chinn, charity steward at Burnham Freemasons, told Burnham-On-Sea.com: “As soon as we heard about this brave couple’s need for an MRI scan for their baby, we wanted to help. We hope that the MRI scan will provide them with some answers.”
Pictured: Top, Kayleigh Hoff and Jake Davis with Burnham Freemasons’ Chris Perry and John Chinn presenting the cheque
