Erabaru.net. An eight-month-old baby who found it nearly impossible to fight off an infection needed expensive specialist care to keep him from becoming seriously ill.
Journey O’Connor was born with a rare lifelong condition, which means she has excess fluid covering her upper body.
As a result, her immune system is low and she is currently battling cellulitis – an infection that has caused her arms to double in size – and sepsis.
The “smiling little girl” is due for major surgery, but her parents have been warned she could get cellulitis up to six times a year in the future.
His condition is incurable, but his family is asking for donations to help him see specialists for treatment.
Her mother, Mel O’Connor, said: “Journey is a smiley little girl. You wouldn’t even know there was something wrong with him, he was brilliant.”
“But he suffered a lot. The infection has made his arms so big that he has trouble even sitting up, so he often falls over.
He added: “We wanted to get him to these private specialists in Birmingham as soon as possible to prevent him from falling ill again, it’s heartbreaking to see him like this.”
“Unfortunately, it’s not something the NHS can provide us with, so we are currently investigating privately.”
“We’ve been told £180 an hour for treatments that can be done to get it under control, and this could be required three times a week depending on what they say at the consultation. A single consultation costs £240.”
Doctors advised Mel to terminate the pregnancy when they noticed Journey had a cyst under her arm during a 16-week 4D scan.
It was originally thought to be Hydrops Fetalis, which can cause fluid to collect around the baby’s heart, lungs, and inside the stomach, and had a low survival rate.
But Mel, from Devonport in Plymouth, declined because she believed Journey would survive the pregnancy.
“It got worse as time went on, the pregnancy was really scary the whole time,” the mother said.
“I was told I had to have a caesarean section because if I gave birth naturally there was a chance I would lose my life.”
When Journey was born, the doctors were delighted to discover that all of her organs were working.
But a diagnosis of extensive lymphatic vascular malformation means he has defects in his immune system, and even a common cold could endanger him.
For the past eight months, the boy has had to travel to Great Ormond Street Hospital in London every 12 weeks to see one of only two NHS specialists in the country able to offer treatment.
After falling ill with cellulite, he spent his first Christmas in the hospital.
“This is awful and it really worries us,” Mel said. “As a mother, you worry about your children, but we worry a lot about who gets them and where we can take them.”
She added, “It makes me feel like I just want to wrap it in cotton and protect it.”
Journey’s grandmother Tina said “there was a lot of crying in our house, but we’re praying that Journey gets the care he needs.”
The family are hoping to raise £5,000 for comprehensive private decongestant therapy (CDT) to help stop Journey from developing cellulitis. (yn)
Source: Metro
