Young girl with rare genetic disorder has £7000 raised for her by local community
PUBLISHED: 13:50 18 July 2018 | UPDATED: 13:50 18 July 2018
A young girl with a rare genetic disorder that affects just 30 children worldwide has had £7000 raised for her to allow her to live safely at home.
Elsie Lane from Fakenham had to spend the first 9 months of her life in hospital after she was diagnosed with Kagami Ogata Syndrome which severely affects the respiratory system and needed specialist equipment not available on the NHS to live at home.
Several charities and local businesses from across the area donated to the cause in a great show of community spirit, with fundraisers being organised by Katy Walford, Ian Woodley and Katey Ellis, the Fakenham Conservative Club and Sacred Heart High School.
A hope for Elsie ladies night was also supported by 30 local businesses.
Elsie’s mother, Rebecca Gooderson, was delighted with the generosity she and her daughter have been shown and said: “Without the funds raised it wouldn’t have been possible to not only attend all of Elsie’s vital hospital appointments and get out of the house generally but to also have been given the opportunity to experience things for the first time with her that we were unsure we’d ever get given her poor prognosis.
“We hear such bad things about humanity but this demonstrates to us how people are prepared to help others in times of trouble. I would never have been able to afford the equipment needed and we are so thankful for the generosity we’ve been shown”.
Donations were also given to the cause from the Sunshine Ladies and the Reach for a Star charity, as well as from Ann Clarke and from various people online through the GoFundMe page Elsie’s mother has set up.
The money was used to purchase a specialist car seat from America, a pushchair and a medical monitor.
Elsie was given little chance of survival when she was born 13 weeks prematurely but will be celebrating her 2nd birthday in August.
Doctors nicknamed her ‘miracle baby’ and her mother has organised a party for those who have helped secure the essential equipment to allow Elsie to live at home.