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Bringing Community Together with a MWS Approach to Life

How the Sell family embraces their son’s Mowat-Wilson Syndrome

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Article by Kathy Bell, mother of Kevin

You don’t have to spend much time with a person who has Mowat Wilson Syndrome to figure out that his or her love for life is key to who they are as individuals and how they bring us together as a community.

As parents raising children with special needs, we often hear people remark with appreciation about how it takes a village to raise a special child. In our Mowat Wilson community, I think the opposite is also true. When we involve our children in the bigger world around them, the community benefits and learns from them as well.

People may get involved in one way or another out of kindness or a willingness to try something, but what often happens, as the relationship develops,  its richness is as beneficial to the community as it is the person with MWS.

No one teaches us that more than Christian Sell. Christian, a young man with Mowat Wilson Syndrome, is 25 years old. He lives at home with his mom and dad, John and Wendy. He loves to hang out with his brother Justin, who is his biggest advocate.  The love between them is obvious to anyone who meets them.  Their relationship is a model for any siblings. The bond they share is one we see frequently with our MWS siblings.

Many of us met Christian at the Mowat-Wilson Syndrome Foundation Conference in Washington DC last June. Christian sang a Beatles song with Justin and  his cousin Kathlynn, who was at the conference speaking to us about music therapy.

If you were there when Christian sang, you know there wasn’t a dry eye in the house!  Christian’s speaking and singing words were remarkable and it certainly gives us hope that our kids “will get there” one day too, but there was more to it. It was a familiar song sung in a group of people with common ground. The connection was strong.

After hearing Christian sing, I heard many people, myself included, talk about how their kids like to sing, with or without words.

Music is something Christian loves to share with his brother. I challenge anyone to watch Christian’s and Justin’s car karaoke and not laugh out loud!  Shared on our MWS facebook group, this YouTube video rivals any James Corden carpool karaoke episode. It shows a willingness of both brothers to live in the moment and share a simple pleasure.

I also admire Christian’s devotion to his local hockey team, the Norwich University Cadets. One of Christian’s first questions for anyone he meets is “do you play hockey?”  When I met Christian, he asked me and told me about his love of hockey.

Having attended almost every home game since 2000, Christian has developed a personal relationship with the team and its ever changing group of young men. Over the years, he has also become friends with hockey players on many opposing teams even going to watch games in Maine, New Hampshire and Massachusetts when his Norwich players are playing teams on which he has befriended players.  One of the local papers wrote a great story, highlighting his connection with the hockey community.

When Christian was hospitalized for 9 days with Sepsis pneumonia in early 2016 some of the NU team visited him in the hospital. During the visit Christian invited them to his house for a cookout.  Later that year, the entire team showed up at Christian’s house for a great day of food, fun and laughter!

I think that the relationship that Christian has with this team can be played out in one way or another in all of our communities. I realize this commitment happens with a lot of support from friends and family.

Over the years Christian and his family have become close friends with 1964 The Tribute, “Best Beatles Tribute on Earth” according to Rolling Stone Magazine. In January they will be attending their 50th concert in 20 years!  Here too, Christian has developed close friendships, not only with the band, but also many other people who also attend shows regularly.

This friendship is the foundation for a large Mowat-Wilson Syndrome Foundation fundraiser being held in Christian’s hometown of Barre, VT next May featuring 1964 The Tribute as the musical entertainment!

In the little bit I know about Christian, I see his appreciation for the simple things in life. His approach is beautiful and humbling in many ways. I think Christian reminds all of us to sing and cheer as loudly as we can and make the most of everyday. Take a look at the Sell’s slide show of their trip to Washington DC for the 2017 Mowat-Wilson Syndrome Foundation Conference. Let it inspire us all to get out there and participate in the world around us!

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John and Wendy Sell are board members of the Mowat-Wilson Syndrome Foundation.
They bring an incredible value to the Foundation and the MWS families. Feel free to contact them.