Community rallies to help Bobbi
By Nub News Reporter
18th Feb 2024 | Local News
CARING people from across south Essex have rallied to help fund a dream trip to Disneyland for a local eight-year-old girl on the cusp of losing her eyesight.
Bobbi Bewley, from Noak Bridge, has been diagnosed with Wolfram disorder which causes blindness, deafness and breathing difficulties. The illness, diagnosed late ;last year, is also life-limiting and Bobbi is unlikely to live beyond 30.
Bobbi's disorder currently has no treatment, though her parents and family are hopeful that a medical appointment next month might provide some hope, and she has already begun to lose her vision and struggles with pain.
Family and friends have rallied behind Bobbi and her parents Jodie, 36, and Michael, 38, Bewley, and siblings Demi, 15 and Ritchey, ten. A fundraising page has been set up so the family can create special memories with Bobbi before she loses her eyesight entirely.
Jodie said: "Unless the diagnosis had said 'death straight away', I couldn't have imagined anything worse, reading the details of the disorder, daily I look at her and I am just devastated.
"Bobbi is a right little character, she is really caring and quite outgoing and that is why I feel so devastated, she was going on so well, she was doing drama, and she was enjoying life, she is such a sweet little girl and is loved by her friends and the parents at the school.
"What we'd love to do is take her to Disneyland and get extra help and support for the family, I have given up work and my husband is on reduced hours, my hands are tied and what we want is to make special memories with Bobbi before she loses her vision."
Jodie has been looking into all forms of treatment to help Bobbi, and the youngster is set to go to a specialist Wolfram disorder clinic in Birmingham Hospital in March for clinical trials.
The family hope this may provide a glimmer of hope and help them find a potential treatment.
Bobbi's GoFundMe page, set up by family friend Caeleigh Adams, has already raised £3,438 towards a £4,000 target can be found at https://www.gofundme.com/f/bobbi-bewley
Caeleigh says: "Caring for Bobbi has had a massive impact on the family. Jodie can no longer work and Michael has needed to take time off work to support the family during this difficult time."
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