A little girl whose skin tears at the slightest touch has found joy on the ski slopes – thanks to a thick padded jacket that protects her like cotton wool.
Raquel Hultman, eight, was diagnosed with epidermolysis bullosa (EB) at birth, a rare genetic tissue disorder with no cure.
While this might’ve doomed her to being inactive for her entire life, she has discovered a love of skiing thanks to having thick ski gear which keeps her protected.
‘You can’t tell how fragile she is when she’s running around in the snow – she looks like any other child,’ her father Ryan Hultman, a residential designer, said.
‘We’re a big skiing family, and Debra Canada helped us get a sit-ski for Raquel so she can join us.
‘There’s lots of padding in that too so when she’s in it she can’t really move that much and we can just hit the slopes.
‘During the winter we go at least two times a week.’
Raquel Hultman, eight, was diagnosed with epidermolysis bullosa (EB) at birth, a rare genetic tissue disorder which has no cure
The second grader, from Vancouver, Canada, took morphine for three years to ease the pain
A forecast of snow is always good news in the family as it gives his daughter the chance to run around uninhibited ‘like every other child’
Sufferers are often called ‘butterfly children’ as it makes the skin as fragile as the wings of a butterfly and can cause it to tear or blister as easily as tissue paper.
Raquel’s padded skiing gear offers layers of protection to her delicate skin, meaning she can run around in the snow and go down the slopes with her dad on her special ski-sled.
‘Raquel’s snowsuit has three layers to it, so there is hardly any friction against her dressings or her skin when she’s wearing it,’ Mr Hultman said.
Skin like tissue paper
Raquel, who gets around on an electric scooter, gets 99 per cent of her nutrition through a feeding tube as her esophagus tears if she swallows anything harder than a yoghurt.
The schoolgirl, from Vancouver, Canada, took morphine for three years to ease the pain and has to have her delicate skin and wounds redressed every second day.
It means Raquel’s parents Mr Hultman, 46, and Renata Hozova, 47, have to protect her from injuries caused by everyday things like walking and she can’t play sport.
Raquel gets around on an electric scooter and gets 99 per cent of her nutrition through a feeding tube
Raquel’s skin will tear and blister as easily as tissue paper, according to her parents
The schoolgirl, from Vancouver, Canada, took morphine for three years to ease the pain and has to have her delicate skin and wounds redressed every second day
The family went through a bad spell last year. ‘Almost every day she would say: “Mom and Dad, I don’t want to have EB,’ her father said
Raquel’s padded skiing gear offers layers of protection to her delicate skin when she skis
The disease, which affects one in 20,000 children in the US, can sometimes be frustrating for Raquel, who is accompanied to school in Brooksbank Elementary every day by her nurse.
However Ryan, his wife, HR manager Renatta, and their 12-year-old daughter Cordelia have worked hard to find a routine that works for Raquel and their family.
The couple found huge support in Debra Canada, an organisation which fundraisers to help improve the lives of children and families living with EB.
‘Last year we had a really bad period where Raquel was just really frustrated. She would cry almost every day and say: “Mom and Dad, I don’t want to have EB.”
‘It can be really tough to find the routine that works for your family with EB and for the first couple years, she was in so much pain she would need morphine every other day.
‘We’ve found a routine that works really well for her, so things have improved a lot throughout the last few years.
Her condition means Raquel’s parents Ryan Hultman, 46, (right) and Renata Hozova, 47, (left) have to protect her from injuries caused by everyday things
Raquel has found huge support in Debra Canada, an organisation which fundraisers to help improve the lives of children and families living with EB
‘Generally she’s such a positive little girl. She’s our firecracker, she’s so adventurous and fun loving. She is a real artist too, she loves painting,’ father Ryan said
Raquel has developed a ‘special’ relationship with next-door-neighbour, her mother says
‘She’s our firecracker, she’s so adventurous’
‘Generally she’s such a positive little girl. She’s our firecracker, she’s so adventurous and fun loving. She is a real artist too, she loves painting.’
Ryan said it has been inspiring to see Raquel’s friendship blossom with her next-door neighbor Jacob Taylor, 11, who regularly accompanies her on the slopes.
‘Raquel’s friendship with Jacob has been so special to watch.
‘The other day when she was getting her dressings done, she was in a lot of pain, and he just put his hands on her shoulders and told her to breathe through it, and she did.
‘They’re always just chitchatting and having fun, and he loves to come skiing with us.
‘It’s such a special relationship and really special to see, too.’