Living with Hurler Syndrome
Andrew, our son who was diagnosed as an infant with Hurler syndrome (MPS I), is now 15 years old and full of charisma. No matter the situation, Andrew doesn’t allow anything to prevent him from stepping up to the plate. Having played Little League Challenger Division since he was ten, he rounds the bases with a glowing smile on his face and an external brace around his leg.
“If there is something we want to experience or a place we feel we need to visit, we do it right away.”
In addition to his drive to excel at sports, Andrew is uniquely dedicated to school and his friends. Unfortunately, due to so many appointments, he often misses all “the good stuff” in class. One day there was a party happening for one of his classmates at school, but Andrew had a surgery scheduled. In the morning he went to the hospital where he was administered anesthesia and received new ear tubes to assist his hearing. Afterwards he rested briefly and was sent home.
“On our way to the house Andrew kept asking for me to take him to school. I had expected this of him but he was really persistent, so we went.” Before he could join the party, his teacher made him take a spelling test. “I thought she was crazy, making him take the test after surgery, but she probably thought I was the crazy one for letting him be there. I wonder how many kids have ever had anesthesia, surgery and a spelling test, all in the same day!”
On another occasion, Andrew was pulled from school for a carpal tunnel surgery. He banged his casts together in protest. As we were finally leaving, he wailed to his teacher, “I’m so sorry I have to miss math. I don’t want to go!” Even the teacher was crying, because she had never had a student become so upset because they had to leave school.
Hurler syndrome has given Andrew and his entire family a strong do-it-now mentality. His mom explains: “If there is something we want to experience or a place we feel we need to visit, we do it right away.” That sense of urgency in life includes playing catch in the driveway every morning before school. “You couldn’t ask for a bigger heart or a sweeter kid. He wants to do so much!”
As Andrew prepares for the transition into high school, he is simultaneously readying himself for his fifteenth surgery—a spinal fusion and compression operation to reduce kyphosis, or curving of the spine. Admittedly scared about the upcoming procedure, Andrew began having nightmares in which he was waking up during surgery in immense pain. To help manage his fears, a counselor at school helped him build a remote control with special buttons that enable him to stop a bad dream from occurring or “change the channel.” There is even a magic button he can push to think about his favorite school crush. Andrew is proud of his remote and boasts of its abilities.
When asked about baseball, Andrew fervently rattles off statistics from his favorite team, the Baltimore Orioles. After sympathizing over their loss in the playoffs, Andrew offers an optimistic proposal: he is willing to volunteer and help the team next year as an assistant during spring training. “That’s his optimism in a nutshell,” says Jeff, Andrew’s father. “His favorite team ends their season with a major loss and his next words are, when’s spring training?”
With an inner wisdom beyond his years, Andrew shares his core motto, “I will not look back, only forwards.”
Levi Gershkowitz is a photojournalist who is committed to presenting a dignified perspective of people living with rare diseases. For more information, visit Living in the Light™
“One of those Hurler moments”
A woman came up to me at Wal-Mart. She was looking over and started crying. I knew what it was right away. I asked and she nodded with tears.
When she told me she had been following us around the store, I said, “It’s okay.”
She was so upset she had actually walked out at first.
“I went to the car and called my sister and my husband. They told me to go back in and talk to you.”
I told her again, “It’s okay. I saw you.”
It’s one of those Hurler moments. They had just lost their child and she wanted to know if Andrew had Hurler syndrome. I asked if she would like to talk to him. She couldn’t do it, but I understood.
~ Anne Himes