The halo of hair framed the bright face of the boy wearing the crocodile on his baby blue sweater and optimism in his eyes as he stood in the corner of the court and bounced the ball to his famous father. Then Erik Wilander watched as his father, Mats Wilander, turned back to the business at hand and delivered a serve to an awaiting John McEnroe.
Standing on the har-tru court of the Westchester Country Club in this Monday morning exhibition match 11-year-old Erik was right where he wanted to be — sharing the same space as his Hall of Fame father — while achingly reminded of precisely what he can’t be: a committed tennis player.

Mats Wilander and son Erik
Erik watched his father’s footprints clutter the clay court knowing he can’t follow in those footsteps without paying a painful price.
Erik Wilander suffers from a “mild” form of the skin disease Epidermolysis Bullosa (EB) which affects approximately two out of every 100,000 people in the United States. EB is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blisters, resulting from minor mechanical friction or trauma. Many people get blisters on their hands and feet from time to time following friction, friction that comes from the continued rubbing of skin against a hard object or surface. People with EB, however, get blisters much more easily and in much greater numbers. Severe EB wounds resemble serious burns — but EB injuries keep recurring and there is no cure for skin so sensitive that makes the simple act of a handshake, a hug or lacing up a pair of sneakers painful in the more severe cases of EB.
“It’s just horrible; it’s a horrible disease,” Mats Wilander said. “It’s very, very bad and very, very sad when you see these young kids who are adorable and starting out their lives suffering from it. And it’s such a small disease a lot of people aren’t aware. If you have a bad case of it then it’s very, very hard to make it past 25. Basically, because of organ failure and because of all the pain medication they take and of course the possibility of skin cancer, it is very, very tough for kids with the most severe cases to live long lives and that’s a real tragedy.”
In an effort to reduce the recurrence of blisters Erik experiences, the Wilander family moved from Greenwich, Connecticut to Hailey, Idaho several years ago. The drier climate has helped Erik’s condition. Erik has a milder form of EB — “He’s not in danger of not living a full life, no he’s not in that type of danger,” his father says — but the limitations the disease places on his life are painfully clear to Mats, who describes his son as “an unbelievable sports talent.”
“It impacts his life every day; for his level (of the disease) it’s mild, but it’s not mild because there is an obstacle every day,” Mats says. “He wakes up and he cannot play three hours of tennis every day, which is what he wants to do, and if he does he cannot walk for two days. He can’t do the school outings when they go climbing and do outdoor activities. I mean he can, but then he cannot walk for two days afterward so that’s not mild to me. He cannot pursue his passion, basically, unless his passion is cooking or laying in bed maybe. But his passion at the moment is tennis and he can’t pursue it. That’s not mild; to me that’s heartbreaking. But every time you see his face he’s the happiest kid I’ve ever seen in my life.”
It’s a defiant joy in spite of daily pain.
When Erik was younger, Wilander and his wife Sonya, would conduct a necessary nightly ritual of shedding skin that created stinging suffering in their otherwise happy child as they sat down with Erik and carefully cut away the painful blisters bursting from their boy’s feet.
Now Erik — the third-youngest of four siblings in the Wilander family that includes 15-year-old daughter Emma (who also has a mild form of the disease), Karl, 14, and Oscar, 9 — cuts away his own blisters while learning to cope with the challenges the disease presents knowing that every choice he makes can come with very real and raw physical ramifications.
“It doesn’t improve, but he learns how to deal with it so he learns to wear slippers, he learns when he goes to tennis tournaments he can only play mixed or maybe doubles,” Mats says. “He plays tennis tournaments sometimes and we have to pull him off the court. He doesn’t want to go off the court but he walks like this (mimes limping) and he says ‘I don’t want to quit’ and I say ‘Erik, you have to quit because you’re taking more than 25 seconds. You can’t take 40 seconds between points so the rules apply to you too you’re not a child who has any kind of benefits whatsover.’ So that’s the good thing he knows that and all the kids know he has a disadvantage, but he still (has the spirit): ‘Yes I have a disease, but screw you, I’m gonna kick your ass!’ He wants to play tournaments all the time but he can’t play tournaments.”
The simple act of running for the ball over the course of a match can cause enough blisters to prevent Erik from walking the next day.
“He knows the consequences. We always have to say ‘Erik you play two hours of tennis today you cannot walk tomorrow!’ ” Mats says. “(He says) ‘I know that papa, I know that,’ but he wants to play anyway. ‘But, Erik if you play two hours a day you cannot walk tomorrow and I’m not carrying you. So that’s the hardest thing to say because as parents that’s the toughest thing: you always want to carry him and help him and soon he’s gonna be our size and I can’t carry him and he doesn’t want to be in a wheel chair. Now cuts his own blisters because he gets his own really bad water blisters and he’s learned to cut them himself. You learn how to deal with it.”
Wilander, McEnroe and Thomas Blake were among the pros who convened on the Westchester Country Club’s courts for the 10th annual Mats Wilander Celebrity Tennis And Golf Classic in Rye, N.Y., which included a tennis pro-am and exhibition, golf outing, cocktail reception and silent auction and a dinner. Wilander estimates “90 percent” of the participants in the event have come back every year. It’s those who can’t return — kids with the most severe cases of EB — that are heart-aching reminders of the gravity of the disease.

David Graham, John McEnroe, Mats Wilander, Thomas Blake
All proceeds raised from the event benefit the Dystrophic Epidermolysis Bullosa Research Association of America, Inc., DebRA, a non-profit organization dedicated to finding a cure for Epidermolysis Bullosa. DebRA is the only national organization providing day to day services for people suffering from EB. Wilander’s annual event funds a substantial part of DebRA’s operating budget. For more information on the event or EB, please visit the DebRA web site or email Staff@Debra.org or phone the national office at (212) 868-1573.
Some families can spend $20,000 a year more on bandages for a child suffering from the most severe case of EB. But how do you bandage broken dreams?
The most insidious and devastating aspect of the disease is there is no cure.
“Any cure is basically going to have to come through stem cell research,” Wilander says. “It’s one of these genetic-altering things so we’re basically hoping and waiting for the government to approve the stem cell [research]. This event raises awareness and the money we’ve raised is for bandages to support the families who have kids suffering from the disease and who have to basically spend $20,000 a year on bandages and treatment every year because insurance companies in America don’t cover the cost of bandages. So this is very important for us to raise money to help these kids and their families.”
While DebRA does offer a “wound care clearinghouse” to help alleviate the cost of bandages for the EB community, funds raised are also applied to support the numerous programs and services offered by the organization including the Nurse Educator program, Family Crisis Fund, National Physician Referral Service, Biennial National Patient Care Conference and Research.
Wilander commemorates the 10th anniversary he’s adamant that the cult of celebrity that drives so many charity events does not touch this one and wonders why a Q-rating (or ATP ranking) sometimes seems necessary to compel us to do the right thing. It’s the kids, not the celebs, who are the face and focus of this event.
“What I’m proud of is this is our 10th anniversary here and we have survived without celebrities,” Mats says. “John McEnroe is here and he’s come year after year. But I can’t stand these charities where celebrities are everything where (people come to say) ‘I played golf with Mike Tyson or Huey Lewis and the News.’ It shouldn’t have to be like that — that’s complete bull shit. And I couldn’t believe before I put my name on this event there wasn’t an event. It’s so disappointing we have to do this because it means kids are still suffering.”
It’s a rally between hope and dread — hope that the money raised will lead to greater awareness and increased research to combat the disease, but dread that kids are still suffering. Ultimately, it’s these kids whose skin can be so sensitive to touch that the simple act of a hearfelt handshake or a hug can be a painful proposition that exert the most humane touch on their families.
“What I’ve learned from seeing Erik grow up and what his siblings have learned is such an invaluable lesson I would never trade it. I would never trade,” Mats says. “To me, it’s more positive than negative because the personality I see in him is so positive and the spirit is so pure and good. No life is not just. He knows that. I know that. You know that. Everyone knows that. But he feels that first hand. The smile and happiness on his face when he’s healthy is beyond anything. Of course everyone who has a kid with a disease will say the same thing but, now I’m living with it and I see it. People have a right to complain about little things for sure, but I don’t do it and I thank God and thank Erik.”
The blisters are physical reminders of broken skin that the son has learned to cut away every night before bed, but the famous father sees his young son’s spirit as unbreakable.
“I am a believer that bad things happen to good people because they can deal with it,” Mats says. “It happens to him because I think his spirit is so strong you can’t break it or you just learn to live with it. But if someone needs to have it, then give it to him. He’s the perfect kid. He can survive anything. He’s unbelievable, I must say, even though he’s my kid. He’s unbelievable”
