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Born December 2002 | Thousand Oaks, CA

Living with MPS II

“He's not the kid that says I can't do it... Unless of course it's something you really want him to do.”

Without warning, Jack charges at his mother, Kim, and attempts to drive her out of the living room. She back-peddles, regains balance, and spins around to break free. But Jack doesn't let go, and with a burst of laughter bear-hugs Kim’s waist. “C'mon Jack,” she begs, as she pries his fingers apart. Jerry, Jack's stepfather, remains unphased. “He's on the football team now,” says Jerry, chuckling. “I play football! Foot-ball,” Jack repeats excitedly.     


Jerry got to know Jack and his unique ways of showing affection as his physical therapist, before falling in love with Kim (and Jack) and marrying into the family. He’s seen Jack endure operations including spinal surgery, tendon repair, and a major foot surgery to help with mobility.  “A few years ago he couldn't even walk across the living room,” says Jerry. “Now you’re not even safe trying to get to the couch.”


Jack's rowdy display of love is symbolic for his family, who have fought hard to keep him healthy and happy while balancing their own needs. It hasn't been easy. “We weren't always such a happy family,” says Kim. “I was married to someone who was not involved in any way.” Jack's father was not accepting of his condition and wanted nothing to do with it. Tensions rose, and eventually Kim got a divorce.


Through these difficult times, Kim worried about a similar dynamic unfolding between Jack and his older sister, Nicole. With the amount of care Jack required on a daily basis, Nicole had sparse attention paid to her. “When Jack was diagnosed, she was five,” says Kim. “I was thinking, oh boy, we're going to need a lot of therapy.” Nicole admits she wasn’t particularly fond of her younger brother in the early years. “I wanted a brother I could grow up with and talk to, and I thought I could never have that experience.”

Nicole transformed her attitude to support her brother after her first National MPS Society meeting, where she spent time with another MPS-affected family. “The whole experience of being one-on-one with the family, of just learning more about the disease, helped me realize that these kids are just like everybody else.” Incredible feelings of empathy arose. “I realized I loved Jack, no matter what he had. That opened a whole new door for me.”


Nicole grew closer to Jack and began assisting with his care. In time, she also got involved in advocating within MPS community, helping organize workshops for siblings. “We do skits where we portray situations and show good and bad ways to deal with them,” says Nicole. “We also make coping boxes. They have phone numbers you can call for support if you need it.” Looking towards college, she plans on studying Early Childhood Education. “Ever since then, she's been super focused on any other child with any disadvantage of any kind,” says Kim. “She's super empathic... I couldn't have asked for a better outcome.”

“From Jack specifically, what I've learned is exactly what the definition of courage is. What it really means to be courageous in the face of knowing you're different.

Nicole's story represents the importance of a supportive family and community. “I think it's important to have a team of people working to support you,” says Kim. “It's not weakness if you can't do it alone.” For a while, Kim bore the brunt of the responsibilities in caring for Jack solo, but she has learned that true resilience lies within those around you. She reached out and found strength in numbers. And in love.         


One of the most crucial people in her life is her husband, Jerry, who has taken an active role in Jack's life. Jerry sports his leather biker-wear as he and Jack get ready for a motorcycle ride. “It took him two years to feel comfortable on the bike,” says Jerry. “Getting his feet fixed allowed him to sit properly.” They have been going on rides frequently as of late, through the scenic Santa Monica Mountains of southern California. “From Jack specifically, what I've learned is exactly what the definition of courage is. What it really means to be courageous in the face of knowing you're different. Jack doesn't recognize that as a limitation. He's motivated to win. He's motivated to do what anybody else can do, regardless of what his body can do.”

Jack lifts himself slowly onto the back of Jerry's Harley. He slides his helmet on and adjusts his tinted safety glasses. In the reflection of his visor is Kim, smiling herself, right before her two outlaws roar off into the distance. “Jack has taught me that even under the worst of circumstances, there's still a reason to laugh,” she says. “He has taught me so much. No matter how strong I've been, he's got all the strength.” She is motivated time and time again by Jack's playful, charming, and warm sensibilities in the face of his own mortality. “I hope Jack lives a really happy life. One day I hope there is a cure for this disease, but even if there isn't, I just hope that he can do what he wants to do, change the world, and be who he is.”



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