Eight-year-old Maddison Crockford-Reid has such a rare condition – Sanfilippo Syndrome – that there is no cure.
Her heartbroken family are still struggling to come to terms with the fact that she is unlikely to make it beyond her late teenage years.
But the family have been overwhelmed by supporters rallying in aid of the Miracle for Maddi campaign – they hope to send her away to make precious memories while she still can.
An entire boxing club at Bally’s gym in Fratton is holding a fundraising fight in April, another friend is running the Great South Run and a concert is being put on to raise cash for the young girl.
Maddi’s mum Shelly Reid, 44, told The News: ‘They’re giving us the opportunity to go away and make special memories with Maddi.
‘It will also be memories for people who supported us – we’re overwhelmed.’
Cash will be used to fund day-to-day kit and making their garden accessible for Maddi, who uses a wheelchair.
Maddi will eventually lose the ability to walk, talk, see and hear – dealing a hammer blow to her loving family.
Shelly told of the moment she was told the diagnosis.
‘I came away with “progressive”, “life-limiting” and “no cure”. Those were the words going round in my head,’ she said.
‘We had to tell her brother and sister, and they’ve taken it very hard.’
She added: ‘While we’ve got Maddi still as a hyperactive eight-year-old we want to do as much as we can that she can enjoy.
‘We haven’t got a timeline, no-one can tell me what’s going to happen and when. Every day a little bit slips away.
‘We all know how it ends but nobody knows the journey to get there.’
But Shelly and Maddi’s dad Spencer Crockford, 43, both of Cheltenham Road, Paulsgrove, Portsmouth, have been buoyed by the fundraising.
Spencer said: ‘When we first found out about Maddi it was devastating.
‘You’ve got to try and lift your head up.
‘So when we found out about this boxing event it broke us away from worrying.
‘It’s been unbelievable what people would do – but every day is a challenge.’
Pals Sid Sanderson, 43, James Derry, 43, Lee Wilson, 55, and Neil Bickle, 37, are behind the boxing event.
It is being sponsored by Crest Finance and Taw Accountants.
Sid, organiser of the boxing match, said: ‘We want to give Maddi the best years of her life.
‘The main thing is to send her family away and enjoy it while she still can.
‘This won’t stop here – we’re aiming for £30,000 but hope for more.
‘It’s not surprising it’s so fantastic, it reminds me how great our city is. Everyone we speak to can’t do enough to help.’
To get tickets for the boxing event at the Mountbatten Centre on April 9 email [email protected].
Rare condition means sugar molecules damage cells
THE rare condition Maddison Crockford-Reid is suffering from affects just one in 70,000 people globally.
And the eight-year-old has a variant that just four per cent of those people have.
It means she is missing an enzyme that would break down sugar molecules for the body to dispose of them. These are retained in the body causing progressive cell damage.
Research is ongoing for a cure and Maddison is involved in a trial in Manchester to slow the effect of the damage. She has a powder in food but as it is a trial she may be taking a placebo.
- Holiday to Disney World in Florida
- Trip to Lego Land in Windsor
- Copenhagen Zoo
- Formula 1 racing at Silverstone to see Jensen Button
- Holiday in Turkey
- Visit Peppa Pig World in Paultons Family Theme Park
- New hard-wearing flooring at home
- Specialised buggy for day trips
- Hydropool to keep Maddi’s joints supple