Meet a Child with MPS
Tales of Travis
GEMSS would like to thank Travis and his mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!
“Travis is a kind-hearted and extremely thoughtful boy,” says his mother Steph. She shares that when he is playing soccer and someone is injured, “he is the first one to rush over and see if the other boy is okay.” She has so many positive things to say about her son! “He is also careful about other people’s feelings, he has a great sense of humor, and he is extremely brave through all of his medical procedures.” He is a busy little guy, involved in soccer, swimming, skiing, musical theatre and his favorite past time – Legos!
Travis was diagnosed with Attenuated MPS I when he was 2 ½ years old. They never suspected anything but he did have a lot of ear infections. While getting his pre-op physical for placement of ear tubes, the physician noticed some small differences and thought he might have MPS based on the ear infections, umbilical hernia, and a few other findings. She recommended they see a geneticist and the geneticist made the definitive diagnosis.
Travis started in early intervention right in his home, seeing speech, occupational, and physical therapists every week. He started in preschool 4 days per week and is now a robust second grader at age 8. “You would never know he has these medical issues,” says Steph. He has an IEP and sometimes it is hard for school staff to remember he has these medical and developmental challenges. But he is fully included in school and gets his services blended into typical parts of his day. “The only 1:1 time he has is for writing support.” He does have accommodations in the classroom to help him with focus and organization as he has an additional diagnosis of ADHD.
Travis goes to visit friends on play dates and birthday parties. Although a bit shy, he likes playing with his friends in the neighborhood and doesn’t have to take precautions. Steph said he is starting to notice his differences though, for instance he can’t throw the ball quite like his friends or do jumping jacks as well as he struggles with coordination. His condition affects his range of motion in his shoulder and hips, and he has fine motor challenges with his hands and wrists. She explained that he knows a bit about his condition, that he is missing an enzyme and he needs it to help his body stay strong and healthy.
He has a port placed so he can have his weekly enzyme infusions at home, working it into his family’s busy life activities. “We usually do the 4-hour infusion on Sunday nights and he is completely portable while the infusion is happening. We just have to make sure he is quiet so the needle doesn’t come out,” Steph explained. She puts the needle in his port and the medicine can go in a backpack so he can walk around during the infusion. “It was life-changing to be able to do this at home and not have to go to the hospital any longer for the infusions.”
Besides the infusions, Travis has had other medical procedures and operations. He has had 4 sets of ear tubes placed, hernia repair, port placement and two carpal tunnel surgeries. He sees every specialist once or twice a year.
Steph knows that the buildup of waste products in the cells can have a long term effect on his joints, especially his spine, but is cautiously optimistic that his early start on treatment will bode well for him in the future.
Steph got a quote from Travis: "My medical issues are no fun, but I am hopeful there will be a cure sometime soon. In the meantime I am happy to have fun playing with my toys and my brother and sister."
Steph’s Advice to Parents:
- This condition impacts every child differently – no two children are alike and the presentation is different in each person.
- Since it is rare and complicated, it is hard to get answers but the MPS Society is the best resource. (Steph is a parent volunteer who speaks with parents of newly diagnosed children.)
Steph’s Advice to Teachers:
- Children with MPS I can look like every other child. The issues aren’t visually apparent in all presentations of the disease. Treating them like “typical” children is great….BUT, you really need to understand the medical conditions and read the IEP.
- Many needs are not obvious so make sure you read up on the diverse components of this condition.
- There is nothing to “worry about” in school. You just need to understand their needs well and make appropriate accommodations.