'We took our little boy for a routine trip to the doctor, a week later we were told he might not live to see his tenth birthday'

When six-year-old Brynley Phelps began walking a little differently his parents didn't think it was anything serious.

However, after what was expected to be a routine trip to the doctors, his family had their lives completely turned upside down when Brynley was diagnosed with a rare and incurable brain condition.

Dad Christopher said: "Up until the age of five Brynely was a completely normal and healthy child, but then one day back in March last year we noticed he was walking a little bit stiffly and decided to take him to the doctors to get checked.

"We thought he'd hurt himself playing, or that he was just a bit stiff from being stuck inside so much during the lockdown, but we honestly never expected what came next.

"The diagnosis came very quickly after an MRI scan, maybe within six weeks, and when we were told about the condition we literally broke down. I couldn't believe it was happening and it honestly felt like something you would see on the television and not in real life.

"As a parent you will do anything in your power to take care of your kids, but when the doctor is telling you there's nothing you can do then it just completely breaks you."

MLD, or Metachromatic Leukodystrophy, is a rare hereditary disease caused by an accumulation of fats destroying the protective layer surrounding the nerves in both the central and peripheral nervous system.

Side effects caused by the stifling of the nerves limit a persons ability to move, swallow, and eventually even breathe.

Six year-old Brynley is pictured with his parents Christopher and Lucy Phelps (WalesOnline/Gayle Marsh)

Christopher, 33, and wife Lucy, 39, said the speed in which the disease has taken hold of their son's life has been especially difficult to bear.

"They say with a condition like MLD there is a life expectancy of five to ten years after diagnosis, and there are currently no treatments outside of symptomatic relief available on the NHS," added Christopher, who lives in in Ebbw Vale.

"It's so rare that we think he may be the only person in Wales with the disease at the moment, and with most of the gene therapy treatments that could help still being in the trial phase, we are left praying for a break through every day.

"We have even tried to get him over for one of the trails in Milan, in Italy, but after a number of tests were told that his condition was too far gone, so it's been very frustrating and tough on our family at this point."

While Brynley currently remains active with the aid of a wheelchair when he needs it, with no cure available doctors say the disease will limit both his intellectual and motor functions over the coming years.

Despite the odds against him, his parents as well as his two siblings and family are doing everything they can to support Brynley having a normal life for as long as possible.

Former store manager Christopher, who left his job to take care of his son full time last year now describes the resilience of his young son as something he is immensely proud of.

"Despite everything he's gone through with all the trips to the hospital and a worsening of his symptoms, Brynley is still a very happy child who wants to play and do things, and is known to everyone locally as a real sweet-heart," he smiled.

"The goal for us is to keep him as stable and active as possible over the next few years, and keep on praying that some of these trail therapies will become available to him.

"Myself and my wife have both left work to care for him full time now so it is very difficult, but he's also got his older sister who he's very close with and that's helping him a lot as well.

"We live for our kids so trying to keep things as normal as possible for all of them is very important to us, though we are also determined to stand and fight for any future treatments that might help our son."

Mum Lucy - who used to work in a school - said while she tries to stay strong, every day is a struggle for her knowing what her youngest son is going through.

She said: "Of course it's hard to go on as normal when you know what he's going through, and as I'm sure any parent would understand the last year has been complete hell for us.

"Having this diagnosis come out of nowhere and then seeing your son get worse just breaks your heart, and while we have a very supportive family and friends, there's nothing anyone can say to make it better.

"We are definitely disappointed that he hasn't been offered to be part of any of the gene therapy trials yet, as we feel it could be a very effective option for Brynley, though we won't give up hope.

"We are hearing of new things in the pipe line happening in America in trying to beat MLD, and even though this is at a very early stage if it became a successful trial we hope our son could be considered.

"In order to fund this possibility we set up a gofundme page for Brynley in case something does come of it. However if that treatment doesn't come in time, we would use it to to assist with continued travel expenses to and from hospitals, and ultimately try to give him the trip of a lifetime."

To donate to Brynley's gofundme page visit https://gofund.me/1f56685f