Just4Children want to raise funds to allow Fraser to access specialist therapies, and purchase equipment to support his development and improve his quality of life.
Fraser is aged 11 months from Chester. From birth Fraser’s life has been full of challenges. We want to give him the best opportunities we can to overcome these and reach his full potential, whatever that may be.
When Fraser arrived in November 2019, doctors quickly realised something was wrong and we became one of the 6,000 families a year to have a child with a genetic condition so rare there is no diagnosis.
Fraser was rushed to Alder Hey at 36 hours old and had lifesaving heart surgery at just 10 days old. We spent our first Christmas and New Year as a family in hospital which was a very difficult and uncertain time. The only way Fraser was eventually able to come home was to be attached to an oxygen cylinder 24/7. This remained until he was 6 months old.
Fraser’s ongoing challenges include hypotonia which means he has very low muscle tone and is unable to hold his head up or sit up without lots of support. He’s also severely visually impaired, has global development delay and suffers from frequent seizures.
Fraser has spent lots of time in hospital and been through many tests and procedures, but none have provided any clues as to the cause of his difficulties or what his future may look like so we’ve recently agreed to join a genetics pilot study in the hope this may lead to a diagnosis for him, and contribute to important scientific research.
Blue Skies Ahead therapy centre has been a lifeline to us, and we have seen huge development in Fraser since he started going for regular sessions and using the specialist equipment there. This all comes at a cost however, so we are grateful for any help to meet the ongoing costs of Fraser’s therapies and to purchase specialist equipment for home to support Fraser’s development further as none of this is available through the NHS.
Discovering our little boy will have complex needs for the rest of his life was devastating, but we are determined that Fraser will live his life to the full and have lots of adventures along the way!
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