I always feel a little weird at that moment I’m standing opposite a stranger’s front door realising they know absolutely nothing about me; the person knocking on it.
In this instance I also felt, well, pretty damn apprehensive. The request for help that I was moments away from hearing more about sounded like it was going to come down to one thing – the need to raise money. Fast. I’m no good at this. In fact, I tend to be pretty brutal about saying no to requests that involve money. I have to be. It’s not really what my offer of help is about and if my own bank account is anything to go by, those in need of wedge are probably better off without me involved.
All that said, I’m so glad I took this one on and not really as a result of how it’s all panning out but rather because I wouldn’t have got to know Trudi and her family if I hadn’t.
From the moment she answered the door that day I realised that Trudi was pretty fucking special. Her daughter, Eden, she explained, since November last year had been suffering from something called a “Myoclonus Diaphragmatic Flutter”. After a knowing nod and a covert google I learnt that this “Belly Dancer’s Syndrome” (because of the visual impact it has on the body) is essentially a misfiring diaphragm that ripples spasms throughout the body even preventing speech and something resulting in full blown seizures. Horrible. It’s both extremely rare, completely debilitating and the only known specialist was based a massive 4,700 miles away in Colorado, USA.
The past few months for Trudi, Eden and Galia (Trudi’s youngest daughter) had looked like a manic mix of rushes to the hospital, different mixes of painkillers and muscle relaxants and obsessive googling to plan how best to join the dots in this quest to stop Eden’s suffering. If I felt I couldn’t doing anything to help before I’d heard all this, I came away thinking I simply had to find a way.
The challenge was straight forward – raise enough money, maybe three or four thousands, to pay for flights, accommodation and initial consultations in Colorado and to do this as quickly as possible. Crowdfunding, I decided, was how we were going to do this and given how unique Eden’s circumstances were (she’s the only sufferer of MDF in the UK and the youngest in the world) I figured if I hounded journalists first and you lot second, we may just be able to do it.
Here’s what happened….
Fast forward a month and to speak to Trudi I no longer have to be that creepy guy standing on her doorstep. We catch up over Skype, 4,700 miles apart. Through spending time with doctors and patients, Trudi and Eden are making far quicker progress towards health.
The journey for them is not over though. It’s still not known if Eden can rid of MDF altogether or whether the long term task is to manage it in a way that doesn’t effect the amazing potential she so obviously has. Someone who smiles as much as she does, even amidst the suffering she’s been going through, deserves all the luck and love life has to offer. With a mum like Trudi though, I sense she’ll be just fine.