PARENTS of a five-year-old boy with a rare disease brain disease have spoken out about how their son can literally be SCARED to death.
Reed’s mum Erika, 33, from Iowa, US, said: “We have got to be really careful what we expose him to because he could be frightened to death.
“The stress of it all can speed it [the disease]up.”
Reed was diagnosed with the disease at the age of two, in November 2014, after his mum noticed he began to limp after waking up from a nap.
Doctors thought Reed has a small fracture and put his leg in a cast for two weeks.
Reed underwent a series of tests, with doctors struggling to find an answer to the toddler’s mobility issues.
It was after taking Reed to see specialists at the University of Iowa Children’s Hospital, in February 2015, that an MRI scan revealed he had the untreatable illness.
The disease means Reed will slowly lose the ability to eat, talk and breath – eventually causing his organs to shut down.
The youngster has already lost his ability to walk and is now confined to a wheelchair.
Speaking about the “sickening” moment his parents found Reed was diagnosed, Erika said: “We had so many hopes and dreams for him but they all vanished in that moment.
“It was really hard to take. I almost felt like a zombie. I was just thinking, ‘what do we do now? There’s nothing we can do to help him.
“I still haven’t prepared myself for when that day, when he does leave us, comes. I try not to think about it.
“I do wonder how I will cope. We will have to define who we are and I wonder what life will be like without him.
“I haven’t thought about a funeral. I’ve struggled to come to terms with it.”
After living with the disease for three years doctors predict the youngster will tragically die from the condition within three to seven years.
Ever since his diagnosis Reed’s Parents, Erika and Jesse, 32, said they have “dedicated” each day to giving their son the best life they possibly can.
Erika said: “We want to give him the best life we possibly can and enjoy him whilst we can.
“We are trying to give him as many opportunities in life and try and soak up every second we have with him.
“Our world has been completely altered. It’s been life-changing.
“Everyone has been showering him with as much love as they can to ensure he’s as happy as possible.”
But despite the staggering odds that her son could be dead in a matter of years, Erika is holding onto hope that a cure can be found for the disease.
A global research project is currently underway, but a treatment or cure will come at a cost for the families of VWM sufferers.
Speeding up the progress of finding a cure comes at a cost of approximately $2 million, and it’s up to the families themselves to raise the funds to save their children.
Reed’s family and friends have managed to raise an incredible $150,000 towards funding research.
Erika, added: “Even with a terrible prognosis there is hope. We will continue to fight for Reed and the research, and try to raise as much as we can.
“The research is underway. We can only hope that before it’s too late there can be a cure found to slow down the progression of the disease.”