‘I’m 12 and had a heart transplant because of a disease that affects only 13 people in the world’
When 11-year-old Trey Taylor woke up from a six-week coma, he discovered he had a new heart.
Trey, now 12, remembers waking up in a white room, feeling scared and desperately wanting to talk to his father, but couldn’t make a sound. After being on a ventilator for weeks, his vocal cords swelled and he was unable to speak for several days.
She said: “My dad said he could see the fear in my eyes when I found out I couldn’t talk. He saw my eyes widen.”
Trey also learned that he has a rare condition that is believed to affect only 12 people in the world.
He lives with an extremely rare form of muscular dystrophy linked to the LMNA gene, which affects all the muscles in his body, including his heart.
Less than two months ago, while shopping with her mother, she suddenly felt unwell and started vomiting.
His family thought Trey had norovirus. However, when his condition worsened in the following days, he was urgently taken to hospital, where doctors discovered that his heart was dangerously enlarged.
“That’s when I knew something was very bad,” said his mother, Elise Taylor. Independent. “I was under the impression that my son had norovirus… and to be told 48 hours later that he had multiple organ failure and was actually dying was very scary and overwhelming.”
While Trey was in a coma, he was transferred to Great Ormond Street Hospital (GOSH) for a heart transplant. One of the biggest challenges for his mother was not being able to talk to her son for so long.
“It was really hard because we like to chat a little bit and we’re always singing and always doing silly things and we’re always together,” she said.
“I really felt like a piece of me was missing, and all I could do about it was stay by his bed and read to him, hoping he knew I was there.”
Due to his condition, the protein in Trey’s leg muscles cannot regenerate, meaning he cannot walk freely and needs a wheelchair.
A year after the transplant, he said the biggest challenge was trying to explain his condition to people. People will assume that he is paralyzed and cannot move his legs, which is not true.
“I think if everyone had a little more knowledge and understanding, it would make the world more inclusive,” Ms. Taylor said.
Despite the obstacles, she said she was happy to learn how unique her situation was: “Because I’m one of 13, and I’m not ordinary anymore.”
Ms Taylor said her aim in life was to encourage as many people as possible to become organ donors. “It sounds weird, but it saves lives, and Trey is proof of that,” he explained.
“I never thought about it or saw it that way until I got there, but I wish I had known years ago. I would have spent many years trying to make sure everyone I was related to and knew decided to go for it and donate all their organs.”
Aoife Regan, director of impact and charity programs at GOSH Charity, said: “We are delighted to see Trey celebrate one year since his heart transplant and wish him and his family all the best as his recovery continues.”
To mark Rare Disease Day on February 28, the charity called for more research into rare childhood diseases affecting children like Trey.
Rare Disease Day aims to raise greater awareness and change for the 300 million people living with a rare disease worldwide.
GOSH Charity is the largest funder of child health research and has invested more than £70 million in research into rare or complex childhood diseases.
“Trey’s journey shows what expert care can do and is also a powerful reminder of the need for more research into rare diseases,” Ms Regan added.
“Half of rare diseases affect children, and as new discoveries are made, it is vital that no child is left behind to ensure promising breakthroughs and treatments reach the children who need them.”
