Baby’s arms double in size due to rare incurable condition
The little one is in need of expensive specialist treatment.
An eight-month-old who finds it near-impossible to fight off infection is in need of expensive specialist treatment to stop her from getting seriously ill.
Journey O’Connor was born with a rare life-long condition, which means she has excessive fluid covering the top half of her body.
As a result, her immune system is low and she is currently fighting Cellulitis – an infection that has caused her arm to double in size – and sepsis.
The ‘smiley little girl’ is awaiting a major operation, but her parents have been warned she could get Cellulitis as much as six times a year in the future.
Her condition is incurable, but her family is asking for donations to help her see a specialist for treatment.
Mum Mel O’Connor said: ‘Journey is such a smiley little girl. You wouldn’t even know there was something wrong with her, she’s just brilliant.
‘But she is in a lot of pain. The infection has made her arms so big that she struggles to even sit up, so she falls over a lot.’
She added: ‘We are wanting to get her to this private specialist in Birmingham as soon as possible to prevent her becoming this poorly again, it has been heartbreaking to see her like this.
‘Unfortunately, it’s not something the NHS is able to provide for us, so we’re looking into it privately.
‘We have been made aware that it is £180 per hour for the treatment that can be done to keep this under control, and this could be needed three times a week depending on what they say at her consultation – the consultation alone is £240.’
Doctors advised Mel to terminate her pregnancy when they noticed Journey had cysts under her arms during a 16-week 4D scan.
It was initially thought to be Hydrops Fetalis, which may cause fluid to gather around the heart, lungs and inside the baby’s stomach and has a low survival rate.
But Mel, from Devonport in Plymouth, refused as she believed Journey would survive the pregnancy.
‘As time went on, it just got worse, the pregnancy was really scary the whole way through’, the mum said.
‘I was told that I’d have to have a C-section because if I was to give birth to her naturally, there was a chance that I would lose my life.’
When Journey was born, medics were happy to find all her organs were working.
But her diagnosis of extensive vascular lymphatic malformation means she has a fault in her immune system and even a common cold can harm her.
Over the last eight months, the baby 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 who can offer treatment.
After falling ill with Cellulitis, she spent her first Christmas in hospital.
‘It’s been awful and so worrying for us’, Mel said. ‘As a mum you worry about your children but we worry so much about who comes close to her and where we can take her.’
She added: ‘It makes me feel like I just want to wrap her in cotton wool and protect her.’
Journey’s grandma Tina says there has ‘been a lot of crying in our house but we pray that Journey can get the treatment she needs’.
The family is hoping to raise £5,000 for private complete decongestive therapy (CDT) to help stop Journey from getting as ill with Cellulitis.
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