Nine-year-old Marley battles rare illness
Ainsworth Morris
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Nine-year-old Marley Case, who is suffering from a rare genetic disorder, has only one wish: to be able to swallow and digest food with ease.
Touted as ‘the worst disease you never heard of‘, epidermolysis bullosa causes his skin to blister and tear with even simple friction.
Therefore, he has always been in need of bandages. And with no known cure, managing the wounds has been a continuous exercise since birth.
To a large extent, his treatment has been administered by his parents over the years.
The disease has now reached a stage where there is a need for him to undergo a critical esophageal dilation operation overseas. His mother, Shauna Case, hopes the medical procedure can be done soon at the Children’s Hospital of Philadelphia in the United States.
This procedure is vital to alleviate Marley’s difficulties with swallowing and will also enable him to receive proper nourishment and prevent potential complications.
According to Marley, not only does he suffer from the pain associated with the dreadful disease, but also the emotional turmoil of not being able to enjoy certain foods he craves.
“At least a week ago, I went on the road with Mom and Dad, and I was going to have a chocolate bar, but then my throat never worked out and I never got to have a chocolate,” Marley said in a recent video posted to YouTube to bring awareness to his case and his fundraising effort for treatment.
Shauna told The Gleaner that it has been a struggle not only for Marley, but also his parents.
“We now have to look to go abroad, and it costs a lot of money. Marley is struggling to swallow. Sometimes he struggles to swallow water, and nutrition is a big deal. His throat lining seems to have constricted and there have been tears on it over time, and we’ve battled through it, but now, it really has gotten to a stage where he requires surgical intervention, and so we need help to raise funds,” Shauna explained.
“Marley’s condition causes his skin to be super, super-duper fragile. He has to wear bandages. His skin blisters, and he has lived his life battling a lot of pain. He gets blisters on his skin, and his blisters extend. You see some on his face. They go on his hands, on his belly, on his feet, toes, and his fingers are fused, and there are a lot of complications,” she told The Gleaner.
Although their campaign meter on the GoFundMe platform states that the parents have raised US$13,026 out of a goal of US$15,000, the burdened mother says more money is needed, especially for care at their home in Mandeville.
“We live in a country where, currently, there is no facility here to help us. We do get to see a dermatologist and his paediatrician occasionally, but the truth is, [his] daddy and I, we have to do a lot of this by ourselves. But it has come to that time where we need help,” she said.
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Marley’s journey has been one of remarkable strength and resilience and a testament to God’s grace, she says, given that he has faced numerous hardships and weathered storms uncommon for children his age.
Despite the excruciating pain, incessant itching, and, at times, the horrifying three-hour-long bath and bandaging sessions related by his parents, Marley’s spirit remains unbreakable, illuminating the lives of everyone fortunate enough to know him.
She indicated that when Marley attends his first epidermolysis bullosa clinic visit overseas, the specialists will help to determine his feeding options – whether multiple dilations or if a gastrostomy tube is needed.
Shauna told The Gleaner that she is grateful for the help they have received thus far and is asking for more persons to make donations.
“Thank you to everyone who is thinking of donating. We appreciate everything. If you are unable to donate, we are still grateful to you if you could share this,” she said.
How you can help
Persons interested in donating can visit the Help Marley Eat GoFundMe page at https://gofund.me/185eef7d or call his mom, Shauna Case at 876-371-4328.