Taking the journey of MPS I

When a child is first diagnosed with MPS I, you may have a lot of feelings including fear, grief, uncertainty, and “information overload.” You may also feel relieved that there is finally an answer for what is happening.

Over time, you may feel frustrated, isolated, and tired. There are resources that may help you, such as counseling and financial support. There is no single “best choice” for everyone, but here are some suggestions you may want to take a look.

    • Treat your child with MPS I like any other child
    • Encourage your child with MPS I to join in activities with other kids of the same age as their conditions allow
    • Children typically prefer daily routines. This may not be always possible during doctor visits and the demands of family
    • Try to find routines that match your family situation. This provides a sense of stability to both you and your children
    • Children with MPS I, like other children, need discipline and must be held responsible for what they do
    • Set proper limits on a child with MPS I as you do with other family members
    • The MPS society may be able to connect you with other families who are ready to share their stories and provide emotional support
    • Some families have created websites to share their stories. You can share your success stories to help others
    • There are people who care about you and would like to help. Stay connected with them
    • Your “support network” may be able to help you by simply listening, talking, get a few things done, or babysitting

As a parent, learning that your child has MPS I can be devastating

You may feel overwhelmed by the debilitating nature of your child’s illness. It’s okay if their diagnosis, their care, and the prospect of the future is an emotional struggle for you—it’s normal to feel upset, angry, or stressed.

Whatever you’re feeling, you’re probably doing better than you think. Either way, here are some tips from patient advocacy groups for parents of children with MPS I on how to manage stress.

Be aware of stress

Check in with yourself

How are you feeling? Are you stressed? Why? Notice it, and think about what you can do in your daily life to make yourself feel better or focus your attention elsewhere.

When you are stressed, you’re not yourself

The most important thing to do is look after yourself. Validate yourself, notice when you’re getting things right. Comfort yourself and those around you—being affectionate with your children and family is important.

Take a break

  • Caring for a child with MPS I can be difficult. Parents need a break to rest and enjoy activities

  • Your other children and family members also need their share of attention and to be taken care of

  • You may consider to have someone come in regularly to help during busy times

  • Children with attenuated condition (less severe) may be able to become more independent from their families. They may benefit from a vacation with children of the same age group

MPS I, mucopolysaccharidosis type I.