Evan Prescott, eight, was diagnosed at birth with epidermolysis bullosa (EB), a rare genetic tissue disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.
A little boy with a rare disease that causes his skin to blister at the slightest touch inhales laughing gas as a way to escape the terrible pain of his daily routine.
Twice each day, Evan goes through a painful skincare routine which involves cleaning, lancing and draining his painful blisters, which used to leave him screaming out in pain.
For the first six months of his life, Evan, from Mercier in Quebec, Canada, was on opioids to deal with the agony before his mother Yandy Macabuag, 35, and his father Marc, 37, decided to wean him off.
After trying a multitude of options that didn’t work, doctors suggested laughing gas as a way to relax Evan during the routine.
Now Evan spends an hour each morning and evening inhaling through the tube and exhaling through his mouth while his parents treat the sores.
Tragic: Evan Prescott, eight (pictured), from Mercier in Quebec, Canada uses laughing gas to escape the terrible pain that comes from his rare disease that causes his skin to blister
Painful: Evan (left and right) was diagnosed at birth with epidermolysis bullosa (EB), a rare genetic tissue disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections
Sufferers of EB are missing type VII collagen – a protein that allows the top layer of skin to bind with the bottom layers.
The slightest movement causes the skin to constantly and consistently fall off.
Evan spent the first six months of his life wrapped in bandages.
‘His hands, his fingers had to be individually wrapped – his toes, everything had to be separated,’ Yandy told CTV News.
Evan often moves around on his knees because the bottoms of his feet can be the most painful part of his body. At school, he uses a wheelchair to get around.
And every two days, he takes salt baths to dry out the skin and minimize any potential health complications.
Devastating: Twice each day, Evan (left and right) goes through a painful skincare routine which involves cleaning, lancing and draining his painful blisters. which used to leave him screaming out in pain
Struggling: Every two days, Evan (left and right) takes salt baths to dry out the skin and minimize any potential health complications
Hope: Two years ago, medics at Montreal Children’s Hospital decided to give Evan (pictured) nitrous oxide – better known as laughing gas – to help make his skin care routine bearable
Change: Evan (pictured) regularly breathes in the gas as a way to cope with the pain as his mom treats his blisters and wounds. He is believed to be the first child in North America to use the gas at home
Yandy and Marc decided to wean Evan off opiates, such as morphine, when he was six months old because they were concerned about the long-term impact on his development.
Preclinical animal studies have shown evidence that morphine can alter hippocampal development in a developing brain.
As he grew, Evan’s medical team explored many pain relief options, including antidepressants, anticonvulsants, and anesthetic creams, but nothing seemed to work.
EPIDERMOLYSIS BULLOSA: EXPLAINED
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
The skin is missing type VII collagen – a protein that usually binds the top layer of skin to the bottom layers.
Any trauma or friction to the skin can cause painful blisters.
In most cases, the symptoms of EB are obvious from birth.
It is caused by faulty genes inherited from one or both parents.
There are many cases when both parents are carriers of the faulty gene without realizing it.
EB is rare – just one in every 50,000 children in the US has it.
There is no cure for EB so the treatment aims at preventing blisters becoming infected.
Two years ago, medics at Montreal Children’s Hospital decided to give the youngster nitrous oxide – better known as laughing gas – to help make his skin care routine bearable.
The experiment proved a huge success and now Evan regularly breathes in the gas as a way to cope with the pain as his mom treats his blisters and wounds.
He is believed to be the first child in North America – and among the first in the world – to use laughing gas in the home for pain management.
Evan said he was very dizzy when he first began using the laughing gas but now he feels more relaxed.
‘The first time I used it I was really scared because I thought it would hurt me and that it wouldn’t do anything to my blisters, but over the years it’s been very helpful,’ Evan said.
‘The gas has been good. Blisters are less painful when I’m using the mask. It’s actually very helpful.
Yandy, an educational assistant, said the treatment has been game-changing in helping her son deal with the painful routine of draining the blisters.
‘Before the laughing gas it was really hard, because he would be in so much pain during the process, he would be screaming out.
‘We were really worried about the impact this daily trauma was going to have on him long-term. He breathes it through an oxygen mask when the pain gets really unbearable.’
Yandy said she and her husband keep the laughing gas in their room and closely monitor Evan’s use of it.
Studies have shown that overexposure to laughing gas can come with dangerous side effects, including brain damage or behavioral changes.
Getting around: Evan often moves around on his knees because the bottoms of his feet can be the most painful part of his body. At school, he uses a wheelchair to get around (pictured)
Looking to the future: Despite his painful condition, Evan’s mother says he (pictured) is a social butterfly and who loves to dance and dreams of one day becoming a zoologist
Despite his painful condition, Yandy says her eight-year-old is a social butterfly and who loves to dance and dreams of one day becoming a zoologist.
‘We’re lucky that he’s such a social kid. We had worried about him adapting but it was eased by his personality,’ she said.
‘Evan has never had an issue making friends. The girls in his class are really kind and caring and treat him very motherly. He loves to be around people and he wishes he had little brothers.’
Evan said he believes the treatment could help other kids deal with the difficulties of EB.
‘The blisters are the hardest part because they make me feel like nobody else,’ he said.
‘I think laughing gas would really help other kids with EB. It would make them feel stronger and they’ll feel proud of themselves. I’m proud of me and I feel strong.’