A mum whose young boy has rare ‘butterfly skin‘ says she refused to “accept defeat” when doctors told her he wouldn’t survive.
Shauna-gay Case, 40, and her husband, Omarie, 39, were told their son, Marley, had a rare skin condition – epidermolysis bullosa (EB) – just hours after he was born.
Doctors said the tot, who blistered and peeled at even the lightest touch, would probably never make it out of the hospital.
But the couple dug their heels in.
Now they have travelled 1,573 miles (2,531km) across the world for expert care.
“Doctors initially gave us a very grim prognosis,” Shauna, an outlet experience advisor, told Need To Know.
“They did not expect him to live or make it out of the hospital and they communicated as much.
“We were terrified but, for me, their outlook in a way stirred my faith.
“I simply couldn’t accept defeat as a mamma lioness.
“It awoke something in me.”
EB is a rare genetic disorder that causes fragile skin that blisters and tears easily.
It is said to make the skin as fragile as a butterfly’s wings.
Shauna said her husband, Omarie, “jumped into problem-solving mode” after the diagnosis.
She said: “It was devastating of course but he’s built differently.
“He researched quickly and found that other children, though few, had been living and surviving with this daunting condition.
“Omarie researched and provided his findings for the hospital staff to use.”
The couple started by learning how to care for Marley – doing anything to keep him alive.
They routinely bathed him in warm, saline soak baths, moisturising his skin and keeping him warm to prevent skin breakage.
According to Shauna, this was a very painful and arduous, but necessary undertaking.
They also sought care from the best medical professionals in their home country, consisting of paediatricians and dermatologists.
Shauna said: “A lot of it was really isolating as on one hand, we didn’t really have anyone to rely on or relate to and we did not want to burden others with the heaviness of the situation.
“There wasn’t anyone who could come by and give us a hand or allow us to get some kind of break.
“Plus it proved too complicated and there simply were not enough resources to address Marley’s varying medical needs.
“So we instead learned to operate as a family unit.
“As a baby, Marley wasn’t able to be breastfed and he couldn’t suck on a bottle without damaging his tongue.
“We had to basically drip-feed him from a bottle.
“We had to be extremely careful while holding him and his older siblings weren’t allowed to hold him for his first few months.”
When Marley turned nine years old, Shauna and Omarie made the big decision to move to the US from their home in Jamaica to give him the best chance at living.
Their son is now in the care of New York Presbyterian, Morgan Stanley Children’s Hospital.
Shauna said: “We found online that in America he could get more specialised care that is suited to his needs.
“He needed ongoing treatment and routine surgeries.
“Nowadays, there is a big difference in support.
“Marley now has a strong medical team where he receives specialised care from different doctors who address all his different needs.
“He has a G-tube, or gastrostomy tube, so the nutritional issues he had faced prior are being taken care of.
“His baths are a little faster but he’s still on the regimen of getting full baths every other day.
“Bath and bandaging sessions have always been quite difficult and painful for him.
“He is soaked in saline baths and baths typically run for three hours.”
Unfortunately, the now 10-year-old has lost his fingers to the condition.
Shauna said: “He had them for the first six years of his life.
“But his condition has since caused them to fuse together.
“It is something we’ve had to adjust to but Marley doesn’t let it get him down.
“He still paints and finds ways to use fused hands to still grip things.”
Marley is a little brother to Shauna and Omarie’s older children – Tyla, 18, and 15-year-old Caleb.
Despite their challenges, Shauna says the family is persevering and that EB “does not have to steal your joy”.
She added: “Looking at life through a lens of gratitude can make all the difference in your lives.
“Try to adopt the mindset that we get to do this rather than we have to do this.”
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