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Mum’s race against time to keep children alive

Mum Mari-V's battle to keep her son AJ and daughter Elise healthy in their fight with terminal neorological illness Friedrich's Ataxia. Seen with family dog Milo.

Mum Mari-V's battle to keep her son AJ and daughter Elise healthy in their fight with terminal neorological illness Friedrich's Ataxia. Seen with family dog Milo.

A BRAVE mother is fighting to keep her seriously ill children alive as doctors battle to find a cure for their terminal condition.

Mari-Vic Gomez, who runs Gymophobics gym, on Rose Hill, Chesterfield, was horrified when doctors diagnosed her 12-year-old daughter Elise and 16 year-old son AJ with the rare condition Friedrich’s Ataxia which affects balance, physical functions and speech.

Those diagnosed with the rare neurological condition are usually given just ten years to live from the time their symptoms develop, but Mari-Vic has set up a nutritional and training regime which she hopes will keep her youngsters healthy for long enough to receive any breakthrough, life-saving treatment.

She said: “The whole family was devastated. We’re now fighting to buy time because scientists are working desperately hard to find a cure and I hope there could be a breakthrough in the next five to ten years. I have to give my kids every chance because they are my whole life so I won’t take my foot off the pedal.

“Elise says the condition can be so bad that sometimes it leaves her feeling like she’s falling off a cliff and at other times she has found simple things like walking in a straight line, touching her nose or carrying a glass of water almost impossible.”

Mari-Vic’s son AJ had once been involved in competitive gymnastics and rugby and her daughter Elise had enjoyed ballet as a youngster but as they grew up they both developed difficulties.

AJ struggled to use a pen from an early age and he became lacklustre, clumsy and developed back problems and lost interest in sport while Elise started to lose weight and developed balance problems which meant she could no longer enjoy ballet.

It was not until Elise was treated for problems with her feet that the foot specialist told Mari-Vic that he felt her daughter was suffering with a more serious condition.

Following trips to the doctor as Elise’s condition deteriorated she was referred to hospital where she was diagnosed with Friedrich’s Ataxia.

AJ was tested and diagnosed with the condition six months later. Mari-Vic ensures her children receive the right nutrition and has thrown herself into research but her greatest personal breakthrough came after she was invited to Cuba to see an old friend who was working with doctors on neurological conditions like Parkinson’s and multiple sclerosis.

The youngsters were put through a gruelling, specialised exercise programme and began using a vibrating power plate gym machine, which was originally created to prevent muscle atrophy among astronauts.

Mari-Vic, 51, of Alrewas, near Burton, said: “They both worked really hard and soon they started to feel super and like normal children and they have improved so much.”

The youngsters now have their own personal trainer.

Mari-Vic added: “If scientists can find a cure for Friedrich’s I’m sure that will have an impact on helping people with other neurological conditions too. We try not to look too far into the future but I believe damaged nerve endings can be regenerated and for now exercise is the key.”

 

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