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Celebrating Differences AND Similarities – Living with Spina Bifida

Utah Caring Stories

(ABC4 NEWS – SALT LAKE CITY, Utah) Meet twin brothers Arthur and Ben Hamilton. They are active 2-years-old’s. Arthur happens to have Spina Bifida.

Dr. Betsy Ostrander with University of Utah Health and Primary Children’s Hospital explained this birth defect to me; “Spina bifida is a congenital disorder, so babies are born with spina bifida. The congenital disorder is of the spine. When the spine formed, part of the spinal cord and the tissues overlying the spinal cord emerged through the back.”

I was extremely impressed to learn that the hospital has a team approach for helping families dealing with Spina Bifida. Paula Peterson in a Nurse Practitioner.  She told me that there are 12 different specialists for every child in their program. “Our focus is not to just focus on the medical issues, but we want to help families meet the challenge of helping their children be independent and love life and function in the community at every major stage of development.”

What can the community do to help families like the Hamilton’s? Arthur’s Mom Jenny said; “Sometimes we are at places and a child will say to their parent and ask why he is in a chair and other parents will just shush their child. I’d much rather have them come up to me or my child and say tell me a little more about what this chair does for you or what you need.”

It was a lot of fun to see Ben and Arthur play as I visited with their Mom. As they were coloring, I took the opportunity to draw outlines of their hands onto papers. They apparently liked that because they had me do it quite a few times. Their smiles were infectious…the good kind!

What’s something that Jenny wants people to know about her twin boys? She got emotional and answered; “I think that kids just want to be kids. They want to play and be accepted and loved for who they are. Including their differences. But more of their similarities. Arthur likes to do so much like any other 2-year-old and it always warms my heart when people realize that.”

It was time for the Hamilton’s to go home. Arthur wasn’t thrilled about having his mother fasten the buckle on his chair. He pointed to me. Jenny asked him; “You want Doug to do it?” Arthur answered; “Yeah.” I helped him and we high fived. It made my day.

These stories deserve to be told. These are Utah Caring Stories. I’m Doug Jessop, ABC4 News.

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