‘It’s no quality of life’ - Parents’ plea to build home for daughters with rare genetic disorder
Jessica and Beth Hannant have a rare genetic disorder and their parents hope to build a bungalow designed to improve the quality of their lives. Photo: Emily Thomson - Credit: Emily Thomson
The parents of two sisters with a rare genetic disorder say their daughters have 'no quality of life' as they make a plea for help to build a new home for their family.
(From left to right) Jessica and Beth Hannant with their parents Angie and Karl. The girls have a rare genetic disorder and their parents hope to build a bungalow in Dereham designed to improve the quality of their lives. Photo: Emily Thomson - Credit: Emily Thomson
Angie and Karl Hannant moved their family to Dereham in 2009 in hope of a better life as they cared for their daughters, who have an ultra-rare genetic disorder.
Sisters Jessica and Beth Hannant, aged 27 and 22, are two of fewer than 50 people in the world with SSADH, which is a disorder affecting the brain. Both girls have impaired vision. Jessica is unable to walk, read or write and Beth suffers from severe anxiety and PTSD.
But the family's plans for a better future were shattered following the loss of their business in 2013, a third generation butchers in London, which left them using food banks.
Mr and Mrs Hannant said they had struggled in recent years and now in desperate need of a new home for Jessica as her mobility had worsened and she found it difficult to get around their current two-storey house.
The land outside of the Hannant family's current home in Dereham where they hope to build a bungalow designed to improve the lives of their daughters who have a rare genetic disease. Photo: Emily Thomson - Credit: Emily Thomson
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Mrs Hannant, 52, who cares full-time for her daughters, said: "It would mean the world to have a home for us all that we desperately need.
"We don't want to see Jessica crawling around this house because she can't get her frame in to walk. It's no quality of life. We do our best for our daughters and they are happy but they deserve more."
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The family were previously approached by Jerry Stone, who specialises in planning and development, along with Graham Nourse planning consultancy, who helped them to submit a planning application to build a bungalow on their existing land, which was approved by South Norfolk Council on October 18.
The next step for the family is to find funding for the build and they have set-up a JustGiving page, along with an appeal for labourers who would donate their time or materials.
(From left to right) Karl and Angie Hannant with their daughters Beth and Jessica (sat down) along with Jerry Stone (back). Both girls have a rare genetic disorder. Jerry Stone helped the family to secure planning permission to build a bungalow in Dereham. Photo: Emily Thomson - Credit: Emily Thomson
Mr Hannant, 54, a driver for Sainsbury's, said: "The bungalow will be designed with wet rooms, specialised equipment and all open plan. It would mean we could bath and shower Jess. It's simple things people take for granted that we can't do. This will be the girls' home for the rest of their lives."
Contact jerrystone7@btopenworld.com, or visit www.justgiving.com/crowdfunding/jerry-stone-1?utm_term=7dA6M3qQa
