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A “bubble baby” who could die from her mom’s kiss is in urgent need of a bone-marrow transplant.
Four-month-old Arriella Andrews was born with an incredibly rare condition called severe combined immunodeficiency (SCID), which means her immune system is totally non-existent.
SCID is the same genetic disorder that Jake Gyllenhaal’s character in the 2001 film Bubble Boy suffered from.
Pumped full of antibiotics
This was the first thing Cassidy-Loren Andrews (27) of Mansfield in Nottinghamshire, England, thought of when she was given her daughter’s diagnosis.
Arriella has spent more than a month in a sealed room in hospital, being pumped full of antibiotics to fight off infections that her body isn’t equipped to handle.
For the first few days after her birth, first-time mom Cassidy needed to wear a gown, gloves and a mask to be around Arriella, as germs from any contact, even a kiss, could have killed the baby girl.
The little fighter, whom her mom has lovingly nicknamed her “girl in the glass house”, is now in hospital waiting for a match so she can have a life-saving bone-marrow transplant.
She says she’s sharing Arriella’s story to urge people to become bone-marrow donors.
“Seeing Arriella like this has been heart-breaking. She’s surrounded by wires and tubes. It’s the worst thing I’ve ever seen.
“It’s every parent’s worst nightmare seeing their child in hospital.”
When Arriella was born on 7 January she seemed completely healthy.
But the tot, who’d been suffering for weeks from a cough doctors believed to be croup, was rushed to King’s Mill Hospital in April when Cassidy noticed she was sucking in her stomach with each breath.
No sign of any T-cells
Over the next three weeks the baby girl was treated for three respiratory infections, pneumonia and the bacterial bug haemophilus.
But a camera inserted into her throat revealed that Arriella had severe thrush all the way down her windpipe.
As it’s so rare for thrush to spread so far, the tot was referred to The Queen’s Medical Centre for specialised blood tests.
Within hours, doctors discovered that Arriella has SCID as her blood showed no signs of any T-cells – a subtype of white blood cell that makes up the body’s immune system.
Cassidy, who’s also a nurse, has had to move to be with her daughter.
“It’s so isolating, especially because she’s suffering from something so rare, I’ve had to leave my family.
“There have been so many days when I’ve felt completely helpless. I remember one day I just sat by her bedside thinking, ‘There’s nothing I can do to help you.’ It was awful.”
Cassidy says this is the last place she thought she’d find herself when she found out she was pregnant last May.
Finding a bone marrow match
“You never think it’s going to happen to your child. But she’s doing amazingly. I’m so proud of her. She’s so bubbly and she keeps on smiling despite everything she’s been through.”
While Arriella’s dad, Jordan, and Cassidy are no longer a couple, he also often visits his daughter.
The parents both had blood tests last week so doctors can do genetic testing to find Arriella a bone-marrow match and narrow down exactly which type of SCID she has.
Despite joining the register to be a bone-marrow donor at the age of 18, Cassidy admits that until Arriella’s diagnosis she thought bone marrow was only used to treat leukaemia.
But since discovering that Arriella has SCID, Cassidy has learnt the true importance of more people joining the bone-marrow registry.
“Going through this with Arriella has really changed my perspective on things. As a nurse I’ve always been the one helping people, not needing help.
“It’s made me realise what it’s like when the shoe is on the other foot. And it’s shown me that the only thing you need in life is your health. If you’ve got that, nothing else matters.
“So if I can get a few more people to join the bone-marrow registry or help any other family with a sick child then I’ve achieved something worthwhile.”
Image credit: CATERS/WWW.MAGAZINEFEATURES.CO.ZA.
