LITTLE PHOEBE’S SKIN IS SO FRAGILE EVEN A HUG FROM HER MUM, ZOE CROWSON, 37, CAN LEAVE HER IN AGONY.
‘Mummy, mummy, please can we go on the dodgems?’ my daughter, Phoebe, five, begged.
Grabbing hold of my hand, she started dragging me towards the fairground.
‘How about the tea cups instead?’ I said, trying to persuade her to have a go on a more gentle ride.
Stopping in her tracks and crossing her arms, Phoebe frowned and sighed, clearly unimpressed.
‘Shall we go and get some candy floss then?’ I suggested as a distraction.
Her eyes lit up, she squealed ‘yes’ and began dashing towards the stalls.
‘Slow down!’ I called out after her, trying to keep up.
A typical five-year-old, Phoebe was always on the go and keeping me on my toes.
Obsessed with Disney’s Frozen, she loved singing at the top of her voice and dancing around just like any other little girl her age.
But after being diagnosed with a rare skin condition – recessive dystrophic epidermolysis bullosa (EB) – when she was a baby, Phoebe was extremely fragile.
When she was just three days old, medics first became concerned.
They took a biopsy which came back 12 weeks later and confirmed she had the condition.
‘It affects one in 14,000 people in the UK,’ the experts told us, when we first found out what was wrong.
They explained young patients were known as ‘butterfly children’ because their skin was as delicate as the wings of the insect.
The disease caused the top three layers of Phoebe’s skin to shear off – the equivalent of a third degree burn.
Falling over and getting the slightest bump or graze would leave her with painful blisters and her flesh would tear whenever I touched her or even changed her clothes.
Devastated, we learnt there was no cure and most sufferers had a life expectancy of just 30 with most victims dying of skin cancer.
It was a lot to take in.
At hospital I had to be taught how to apply bandages and dress Phoebe’s wounds.
The blisters would come away so I constantly had to dress the scabs to avoid her getting infections.
When we arrived home, visitors were desperate for a squeeze, but I feared anyone picking up Phoebe as the slightest touch would leave her skin burning.
‘You have to be extra-careful with her,’ I’d warn guests when they tried to hug Phoebe, as the pressure could easily take a layer of her skin off.
At night, Phoebe had to sleep on a silk pillowcase in her cot to stop her skin on her face tearing if she wriggled around or rolled over.
Born with a mild version of the disease, as she grew up it became more severe and started to cause blisters to appear on her internal tissue.
Going to the toilet was agony for her because it could tear her internal linings apart.
Her skin was always ten times worse in the summer due to the heat and having to wear thinner clothes.
I had to Phoebe-proof our house in Stamford, Lincolnshire, so it was safe for her to play in and wander around.
My relationship with Phoebe’s dad fell apart and I gave up my job as a commercial editor to care for Phoebe full time.
Even covered in play mats with sharp furnishings banished and anything dangerous out of reach, I couldn’t let Phoebe out of my sight at home for more than a second.
Going outside in the wind could even lead to temporary blindness if she got dust in her eyes.
If she hurt herself, started crying and calling out for me, I’d instinctively rush over to sweep her up.
When she ran into the corner of my bed and hit her knee, immediately the skin sheared off and started to blister.
I had to stop myself from picking her up and wrapping my arms around her.
It would only cause her more pain as scooping her up under her armpits would rip the skin.
Tears rolling down her cheeks, all I would want to do is give her a cuddle to make her feel better, but a hug could leave Phoebe in agony.
She was almost untouchable.
Constantly wrapped in bandages, she looked like a little mummy.
I had already kitted Phoebe out in extra padding for our day out at the fair and resorted to taking along a soft cushion for her to perch on too.
Before we went on anything, I had a quick scout around to carry out my own risk assessment.
The bumper cars were a definite no-no. I tried to steer Phoebe away from anything too rough.
I felt guilty holding her back, but one knock and she’d be in floods of tears.
Worried sick she’d cause herself harm, I’d have wrapped her up in cotton wool if I could.
Even simple every day tasks – which most people take for granted – like eating dinner could prove a nightmare for Phoebe.
She almost chocked to death a year ago.
We were eating our tea, when she suddenly started coughing up blood and started to go blue.
Panicking, I took her straight to Great Ormond Street Hospital.
Phoebe’s throat had almost closed up. It was just one millimetre wide.
Doctors said she was one of the worst cases they had ever seen and she had to have surgery to widen her esophagus.
Brushing her teeth can cause blisters too, so Phoebe now has a special toothbrush.
Despite her condition, Phoebe now attends mainstream school and takes part in most lessons.
Although she can often only manage half days due to fatigue.
The other pupils adore Phoebe. They will fetch her special padded seat and know that they can’t touch her or pull her around. She’s as fragile as a china doll.
I always drop her into school extra early and pick her up before the bell rings for the end of the day to prevent her getting pushed about in the crowded corridors.
She can’t always be involved in P.E, playtime and after-school activities.
I tried to take her swimming in a salt water pool, but her skin was too raw.
Instead Phoebe has taken up ballet, as it doesn’t require her making contact with anyone else.
She loves twirling around in her tutu and pointing her toes in her pumps.
‘Mummy, will my skin always hurt?’ Phoebe turned to me and asked one evening. ‘Will I always be different?’
It broke my heart.
Nodding, I couldn’t lie, Phoebe will have to learn to live with the pain.
I whispered to her: ‘You’re special darling.’
Now I’ve set up the Phoebe Research Fund to try and raise support and funds to be invested in finding a cure to stop other families going through what we do.
Phoebe might be as fragile as a butterfly, but she’s as beautiful as one to me too.