Mum Of 9-Year-Old ‘Butterfly Boy’ Explains Why She Can’t Touch Him
Every mother’s instinct is to wrap their baby up in cotton wool and protect them from the world. But for one mother, her need to nurture must be a reality for her own very special ‘Butterfly Boy’.
Nine years ago, Kerry White welcomed a little baby boy called Mason into this world with her partner, Rod. Ever since, she’s had to fight every instinct to touch him and hold him because, as she told UNILAD, Mason’s skin ‘is as fragile as a butterfly’s wing’.
You can watch Mason tell his story below:
Mason has recessive dystrophic epidermolysis bullosa (EB) and his condition has earned him the title of ‘butterfly boy’, his mother tells UNILAD.
EB is a severe skin condition which can be life-threatening. A lack of collagen protein in the skin makes the skin incredibly fragile, leading to blistering or skin loss at the slightest friction or knock.
You can imagine how devastating this must be for a nine-year-old, playful football fan like Mason.
And yet, although he undergoes a painful wound care regime daily, and isn’t always allowed to play with the other kids in the playground at school, Kerry says his positivity never ceases to amaze the family.
Kerry described her child adoringly, saying:
Our favourite things about Mason are how he never moans about living with EB, he just gets on with it.
He is very, very determined to live as normal life as possible and overcomes and deals with all his issues daily. He has a huge personality and is very comical.
In fact, according to Mason, there’s no such thing as ‘normal’. Mason was diagnosed with EB from birth, after having a biopsy within his first weeks on Earth.
The family had to wait three weeks to find out the severity of Mason’s condition and were devastated when the results came back stating he had ‘one of the most severe forms of EB’.
As parents, Kerry said it ‘was very had to absorb and understand’ as they’d never heard of EB before. Ever since, Mason has lived his own uniquely ‘normal’ life.
The youngster has dressings applied everyday to keep him protected, comfortable, and to prevent infection.
Daily, his mum and dad bandage Mason’s skin at home before he leaves the house, which takes two to three hours.
Their boy is looked after at Great Ormond Street Hospital too, by their specialist EB service, which is partly funded by the national EB charity, DEBRA.
The expert doctors and nurses there deal with every aspect of Mason’s welfare, and have done since he was born. They’ve witnessed Mason smile his way through hardships no young person should have to experience.
He’s unable to eat or drink orally, after he coughed up the lining of his oesophagus when he was just six-months-old, wherein he was put on a life support machine and given four painful throat dilatations to stretch his throat due to blistering.
Kerry recalled how her son battled bravely, adding:
He nearly didn’t pull through but Mason is such a warrior. He pulled through and is here to tell the tale.
Mason also had major surgery on his hand, which required 13 weeks on and off the operating table to enable him to use his hands.
We’ve all seen how little babies’ first instincts are the sense of touch, grabbing onto a mother’s finger or their soft blankets.
But Mason had previously been limited in his hand movement because of the severe scarring caused by EB every time he contracted his fingers.
The surgery helped, Kerry explained, and the progression in treatment for EB gives the whole family hope.
Mason has been on a stem cell trial to put collagen VII back into his body, she said:
There’s lots of research happening all around the world as we speak, to try lots of effective treatments that will hopefully one day lead to a cure for this horrific condition.
Meanwhile, Kerry, who’s also mum to Mason’s big sister, Georgia, 14, just goes on loving both her children with the quiet power of motherhood.
It’s not always been easy, but she has special ways of showing Mason how much she loves him.
Kerry told UNLAD she wasn’t able to hold Mason for the first year of his life:
As a baby we were not allowed any skin-on-skin contact, otherwise it would damage him, so we had to carry him around on an incubator pad for the first year of his life.
It was heartbreaking. All you want to do is cuddle your baby.
Now, things are better, she said.
Kerry and Rod can cuddle Mason now but they’ve developed ‘special ways to do it without hurting him’, adding the hugs they share are not like you would with any other child.
The dance teacher from Ringwood, near Bournemouth, added:
He’s so fragile that even a cuddle can hurt his skin. It can be so sore and there are parts of his body that has no skin.
It makes you wonder how a child can cope with such isolated pain – and Kerry says her son ‘deals with pain very well’ with the help of lots of pain medications.
Describing the height of his discomfort, Kerry recounted:
He sometimes struggles with bandage changes or when he has big blisters filled with fluid that you need to pop or sometimes cut with special scissors.
He can get very distressed but overall he never really moans.
It’s like he has more endorphins in his brain that help him cope with what most people really couldn’t go through on a daily basis.
One of the hardest things for Kerry was to learn to care for him, even when that care caused him pain in the moment.
She said she has to pop blisters ‘the size of golf balls’ on his feet just to enable him to walk, describing the experience as ‘a really horrible thing’ for everyone, even if Mason always knows his parents are only doing it to help him.
Helping him, they are, Kerry said. When Mason was born, doctors told the family their boy may never walk.
But through sheer willpower, Mason overcome the odds, and although he has a wheelchair for school lunchtimes in the playground, he can – and does – walk most of the time.
Indeed, Kerry tells us school was a huge worry for his parents. Kerry said Mason attending the local school had become one of her biggest fears, at least in part due to her son’s differences and constant need for bandages covering his sores.
But, like most mums, she was overjoyed to see her child do well, she said:
With him being such a confident, well-liked little boy he’s very admired by his peers. He has lots of friends and they treat him like normal.
Mason may be physically disabled but he’s very bright and does extremely well at school, and he’s treated the same as everyone else, even though he has a bit of time off due to hospital visits and operations.
Mason is ‘doing extremely well’ in the school he loves, just as much as he loves to learn, especially about maths and numbers, for which he has shown a great aptitude.
Moreover, Kerry is proud of how Mason carries himself and tells UNILAD, all of his friends’ parents have said ‘Mason has taught them a lot about life and how everyone is different in their own way’.
Not all adults are so understanding, however.
Kerry told us she feels judged for Mason’s appearance and is often approached on the street by adults who think Mason is being mistreated by his family.
She recalled how these incidents ‘absolutely destroy’ her, adding:
I’ve been asked so many questions when out and about with Mason, which absolutely destroys me as a mum. My kids are my world and the thought of someone thinking I have hurt them is so upsetting.
I’ve been asked if I’ve burnt him, if I’ve thrown him down the stairs, if I’ve left him in the sun to burn, if he’s been in a fire…what hurts the most is they say it in front of Mason, like he can’t hear and doesn’t have feelings.
They sometimes ask Mason if his mummy has been beating him. The list is endless.
Many of these ‘hurtful comments’ left Kerry in tears, but she’s ‘harder to it now’ after realising some people simply don’t consider ‘what they say and how they say it’.
She advised anyone interested and wanting to help Mason to simply be open to conversation about EB, rather than immediately jumping to conclusions about a stranger.
She added, she hands out leaflets, of which Mason is the cover star:
If people do want to know about Mason, my way of dealing with it is, if they ask, I give them a leaflet about EB, and because Mason is on the front of the leaflets, it helps.
It’s nice when we meet people in the street and people say hi to Mason, having recognised him from a leaflet, or from work we’ve done with charities.
I’ll stand and talk about Mason and his condition all day if people approach it in the right way, and I’m always happy to educate them. People usually want to help in some way.
Kerry says the support system offered to her and the family from the UK’s leading EB charity, DEBRA, helps to deal with the pain and upset.
Hugh Thompson, Director of Fundraising and Communications at DEBRA, said:
Mason has achieved so much at school despite suffering from EB; even though he is in constant pain, nothing gets in the way of his desire to learn.
We’ve been able to support Mason and help him and his family have a better quality of life. We’re delighted Mason and his family have chosen to fundraise for DEBRA.
Money raised could fund more research to bring us closer to a cure and help thousands of people suffering from EB here and now, like Mason.
Without donations from members of the public this simply wouldn’t happen as we receive no government funding.
With your support we can help even more people suffering from this painful condition which has such a debilitating impact on life – together we #FightEB and together we will beat EB.
The White family also channel a lot of their energies into raising awareness and fundraising for DEBRA, as well as keeping Mason’s supporters updated through their Mason White Support Group page.
They’re also busy raising Mason to be a happy, fulfilled child.
Indeed, Kerry said:
Mason has been through so much in his nine years and has a very adult head on his shoulders, he makes his family very proud and still manages to amaze us everyday.
Mason is ‘very lucky’ to have been invited to watch games at Bournemouth Football Club, meet the players and even become a mascot for A.F.C. Bournemouth, along the way ‘creating the most special memories he will cherish forever’.
Some people say Mason is very lucky because of some of the people he’s met, and the places he’s visited.
I think to myself, ‘Yeah, he is lucky to do these things and he deserves it but we would all rather he didn’t have to live life with this painful condition day in and day out’.
We are hoping to find a cure and to rid Mason of EB forever – then we could say he is a lucky boy!
Anyone would be lucky to have a mum this strong. Let’s just hope Mason gets the treatment he so desperately needs.
To help fight EB, support Mason’s fundraising appeal via DEBRA.
If you have a story to tell, contact UNILAD via [email protected]
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