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A“LIFELINE” support group launched by Mandy Sellars for fellow sufferers of a rare overgrowth condition could gain charitable status.
Mandy, of Bolton Avenue, Huncoat, set up the group to help families around the world affected by the PIK3CA gene mutation and conditions linked to Proteus Syndrome.
Mandy was the first person in the world to be diagnosed with the condition leaving her huge legs and feet, but says the group now helps more than 150 people reaching out through social media.
She said she hopes it will gain charity status within months, allowing them to provide items such as wheelchairs, clothes and shoes.
Mandy, 42, said: “I’m in the process of getting my charity registered. Once that’s done the people who run the charity can start helping people financially. The Charities Commission have the paperwork.”
She added: “People may be less likely to give to it rather than say a cancer charity because you’re less likely to have someone in your family affected. But this condition is out there.
“It may not be common but there are more and more children being diagnosed with it.”
There are 158 people on the Gopi3ks Facebook page, from all over Europe and also Australia.
Mandy added: “It’s good to be able to help people and parents who are just so confused. The majority of the time doctors just haven’t got a clue. It’s a lifeline that, until 2013, didn’t exist.
“That’s a really good feeling.”
Mandy, who has been taking medication to shrink the size of her legs since last year, has lost five stone but now says she is in a bit of a “limbo”.
She explained: “Unfortunately the body is now getting used to the medication. I wouldn’t say it’s stopped working but I’m not losing any more weight. Unfortunately I can’t up the dose of medication because of the potential side effects.
“I still suffer with pressure sores on my foot, which has stopped me doing a lot of stuff and getting my shoe on. It means being stuck in bed resting my foot. I do go out and enjoy myself, but it’s just finding a balance.”
Mandy is now considering liposuction to help her hit her 14 stone target weight.
To take part in a raffle fundraiser for Gopi3ks visit https://donorbox.org/gopi3ks giving your ‘name/number/meal for 2’ in subject line.
Tickets £2 a strip. The prize is an Indian meal for two at Agra, Accrington Road, Hapton.
Mandy Sellars started the group Gopi3ks to help other suffers of rare growth condition PIK3CA