Hunter Syndrome (MPS II)
Taking Care of Your Son
Focus on keeping your son healthy and giving him the chance to live a meaningful, rewarding life. Include him in family activities whenever it's safe.
Set the tone for others. Be positive. Keep an open mind about other people; they may not know what to say so they don't pry or offend or embarrass you. When someone asks about him, be matter-of-fact about his condition. Talk about him as a person -- his interests, his curiosity, and his sunny personality, too. Let them know what his needs as well as his abilities are, and how they can help, if that's appropriate.
Activity. Start stretching and range-of-motion exercises early to keep his joints flexible. Ask your physical therapist about ways to make exercises part of play. Choose large toys that are easy to grab and hold on to, that won't be damaged by chewing.
Encourage friendships. Talk to other kids (or their parents) about how to interact with your son. Walk up to him from the front, with hands out. Give him about an arm's length of space. It's OK to remind him to touch nice and not hit. But kids will be kids, so prepare him for stares and teasing with role-play and humor.
Extra help for learning. Help him learn as much as he can while his brain is working well. If he goes to school, work with the staff to come up with an individualized education program (IEP) for him. He may be eligible for one-on-one attention in the classroom or help for other issues, like hearing problems.
Take care of yourself, too. You'll do a better job caring for your child when you have people you can turn to to help out with caregiving tasks. Step back, and take a break to rest and recharge. Spend time nurturing your relationship with yourself and others you love. Remember, the whole family is affected by this disease. A counselor can help sort out feelings.
What to Expect
Some boys with less severe Hunter syndrome grow up and live long lives. They'll go through puberty like other teens and can have children. But heart disease and trouble breathing can still cause problems for them.
Kids with severe Hunter syndrome are less likely to reach adulthood. Their brains will slowly stop working, and eventually they'll need special care to make them comfortable.
Parents of other Hunter syndrome boys are a great resource for understanding what's going on, sharing your feelings, and getting ideas for how to live with the condition. You can find ways to enjoy the time that you have with your child.
The National MPS Society has more information about this disease. They can also help you connect with other families who are facing the same challenges.