Nathan’s twin brother Nick was born with MPS II Hunter syndrome. Nick’s body doesn’t make an enzyme that breaks down tiny sugars. The sugars then accumulate in certain areas, causing symptoms that affect every system in his body. “Nick is 19, non-verbal, and at the function level of a five-year-old,” Nathan said. Being his sibling hasn’t always been easy, but Nathan has gained a greater appreciation for his parents and his experiences.
What It’s Like Having a Sibling with MPS II
Nathan started to notice his brother was different than other kids when he was 3 years old. “Because of his condition, we basically grew up in a hospital,” Nathan said. He recognized that Nick needed more attention and care than other people, including himself.
Nick has many ups and downs because MPS II is a very debilitating disease. Nathan had a hard time understanding why Nick couldn’t talk or attend the same school as him. When his friends would come over and meet Nick for the first time, they were always very curious as to why he couldn’t talk or do other things. Not knowing how to explain Nick’s differences put Nathan in uncomfortable situations.
Another challenge for Nathan was the stares his family would get whenever they went out in public. It made him quite upset that people just stared at his brother. “It wasn’t until recently that I realized they were staring because they were curious, they were not judging my brother,” Nathan said.
A Good Cause Came From Having a Sibling with a Disability
It took Nathan a long time to get to a place of acceptance with his brother’s MPS II diagnosis. In an effort to help others, he started a public online support group for siblings called Siblings With a Mission. They have an online story column where siblings and families can share their stories of what it’s like to have a sibling with a disability. “The main reason why I started this is because the sibling experience is so unique,” Nathan said.
The support group is a great place to give AND get support. “You see from stories online that attention issues affect a lot of siblings,” Nathan said, himself included. Whenever Nick had a surgery, doctor’s appointments, or therapy, Nathan didn’t spend much time with his family. Instead, his parents’ main focus was on Nick. During these times, they did their best to share with him what was going on with Nick. That made things a little easier for him.
Advice for Parents and Siblings
Most parents don’t fully realize how special and challenging it can be to have a sibling with a disability. “Try to keep the non-disabled sibling involved as much as possible,” Nathan said. You can also find other sibling stories so you can get an idea of the emotions your child is experiencing.
Whether your sibling has MPS II or another condition, Nathan says to learn as much as you can about their disorder. “Growing up, I became really close friends with my brother’s healthcare providers and I still stay in touch with all of them,” Nathan said. They were a great source of support and he learned so much about MPS II from them.
“Know how special and unique you are to have the opportunity to understand special needs,” Nathan said. There will be times when you feel embarrassed or don’t understand why your sibling is the way they are. But if you accept them you will learn to love spending time with them.
