Stories Of MPS

Jack's Story

Without warning, Jack charges at his mother, Kim, and attempts to drive her out of the living room—like a linebacker pushing her behind the line of scrimmage, i.e. into the kitchen. 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. She is laughing now too. “C'mon Jack,” she begs, as she pries his fingers apart. Jerry, Jack's stepfather, remains unphased, drinking a glass of water across the room. “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 iron grasp around his mom has transformed into a more typical hug. Kim, slightly out of breath, pats his head while maintaining her footing, just in case. Jack has been listening to the conversation. “I put the black stuff on my face, so I could become a football player,” he says. Everyone laughs. “We had to hide all the markers in the house from him,” says Kim.

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He's not the kid that says I can't do it... Unless of course it's something you really want him to do."-Kim, Jack's mother


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, who works as a clinical psychologist and has a keen sense for dynamics in the household. “We were really unhappy five years ago... 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. “He wasn't going to be the star quarterback son he wanted,” she says. 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. The amount of care Jack required from the time of his diagnosis—the weekly ERT injections, the surgeries, the therapies, as well as simply how much energy it takes to watch a child with Hunter's Syndrome—meant 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 and found his condition frustrating. “I was kind of whiny,” says Nicole. “I wanted a brother I could grow up with and talk to, and I thought I could never have that experience.”

Having a sibling with such unique needs meant adjustments for Nicole, and much to her mother's astonishment, she transformed her attitude to not only supporting her brother, but desiring to help the larger community of kids like him. The transformation began at her first International MPS Society meeting in Australia. “She told me she wanted to go,” recalls Kim, who was then on the board of the MPS Society. This was certainly unexpected. “At the time, she hated anything to do with MPS.” But Nicole’s excitement about travelling to a new part of the world outweighed her dislike and she pleaded to join her mother.

“The MPS Society meeting really changed my perspective,” says Nicole. Throughout the meeting she spent a lot of time with another MPS-affected family and then started to see, from a different perspective, the important role she could play in Jack's life. “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. “She came to me and said, 'I wish Jack was here with us,'” says Kim. “I was like what?!” “I was missing Jack,” says Nicole. “And I realized I loved him, no matter what he had. That opened a whole new door for me.” Nicole returned home with an expanded sense of compassion for her brother and a newfound excitement around spending time with him.

The two became very close, and Nicole started to realize the intense vulnerabilities that came with Hunter's Syndrome. Without being asked, she began assisting with Jack’s caretaking. In time, she also got involved in advocating within the greater community, helping to organize workshops for siblings to cope with the challenges of having MPS. “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, and expresses an earnest desire to help other special-needs kids. “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.”

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And I realized I loved him, no matter what he had. That opened a whole new door for me"-Nicole, Jack’s sister


Nicole's story is representative of the importance of a supportive family and community play. “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 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 on an active role in Jack's life. Jerry sports his leather biker-wear as he and Jack get ready for a motorcycle ride. Jack throws on his own leather jacket, something that some of his classmates at school are certainly jealous about. His unmistakable, wide grin grows as the sound of ignition roars in the garage and echoes throughout the whole neighborhood. “Weasels!” yells Jack emphatically, referring to the motorcycle organization he and Jerry both belong to.

“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 in preparation for an annual long-distance ride to northern Arizona with the Weasels, camping with friends along the way. Jerry’s influence on Jack is noticeable, although Jerry stresses how greatly Jack has affected him too. “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.” Jerry and Kim’s decisions as parents have made quite an impact on Jack and Nicole, reinforcing that the source of their freedom is their collective support and encouragement of one another. “It's good to have the network of support,” says Kim. “I think we have it a lot easier than some other families in the sense that we are very connected to the community.”

Jack lifts himself slowly onto the back of Jerry's Harley. He slides his helmet on and adjusts his tinted safety glasses. The road opens in front of them. 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. Ultimately, she is still at the center of Jack's universe, bottom-lining the care he receives, making sure health insurance covers the enormous cost of Jack’s therapy, and just being mom. “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.”