Family Gatherings
Minnesota ~ JoAnn Fletcher
The Minnesota MHE gathering, held in St. Cloud on August 5, included Jennifer, Kevin, Alex, Dominic, Tyra, Tylyn, Kris, Tom, Keegon, Sawyer, Kya, Robin and friend, Leo, Denise, Leo III, my husband, Clint, my son, Avery, and me. For most of us, it was the first time meeting someone with MHE.  Before finding this support group, many of us had wondered if there was anyone else with MHE and dreamed of meeting other families living with it. The gathering was planned for those that wanted to connect with other families living with MHE; to meet each other and be able to share stories about growing up, the ups and downs, the different surgeries that each has had. We compared stories on how each of us had found out that we or a family member had MHE. The gathering was filled with excitement, for now we were able to put a face with the email or telephone chats. It was a fun time where new friendships were made.

It was really great meeting everyone at the gathering. I know more gatherings will be planned, including one in January 2002.  It was wonderful meeting everyone who was able to make it, and those who were unable to, we were thinking of you and hope to meet you soon!
New York ~ Susan Wynn
On August 11th, over 40 members of our MHE family gathered at our home in Pine Island, New York. They came from Texas, Ohio, Michigan, Massachusetts, Florida, Vermont, Connecticut, New Jersey, and from different parts of New York City and State. It was a remarkable day for everyone there, but the best part for us all was watching the children.  Their scars, bumps, surgeries, became badges of honor, and it was suddenly cool to be the kid who had the most!  As adults talked and laughed and hugged, we watched all of our kids playing outside in a game where slowness didn't matter, or limps, or short arms or bowed legs… The kids who didn't have MHE were kids who knew what it meant to their siblings, to their parents, and they played so naturally with the kids who couldn't run as fast, because to them it was natural.  It was a magnificent day, and one that we hope to make an annual event.    In October we were fortunate enough to have some very special visitors. My special email friend from Norway, Linda Engebretsen, came to visit for a week with her son, Johan Olav, and her mother, Anne Marie. We had a mini-gathering when Suzanne, Bobby and Alyssa Caputo joined us, and although Linda did not get the chance to meet Chele and Sarah in person, they had several chats on the phone. During that week we became more than friends, we became family, and we are looking forward to their next visit!
New York Gathering
Top Row, L to R: Cassie, Suzanne, Kathi, Tabetha, Sarah, Alan, Laura, Alida, Ken with Ryan, Lorraine, Audrey, Kveta
Middle Row, L to R: Cindy, Susan, Haley, Shannan, Kristopher, Zachary, David, Jimmy
Bottom Row, L to R: Maddie, Nicole, Chele, Katie, Cassie, Brittni, Andrea, Jessica, Danny, Alyssa, Bobbie, Robert, Conor
Not Shown: Betty, Dan, Alan, Gerry, Loring, Janet
Top Row, L to R: Nicole, Anne Marie, Bobbie
Middle Row, L to R: Linda, Andrea, Alyssa, Suzanne,
Bottom, Center: Johan Olav
Illinois and Florida ~ Audrey Feldman
My husband, Gerry and I (Susan Wynn's parents), en route to visiting our youngest daughter in Colorado this summer, had the privilege of meeting Bill Daniels and his sister, Iva. They are such warm and wonderful people! We met in Bill's shop in Alton, Illinois, and had a pizza party with his whole crew. Promised to stop by next year if he promised to keep getting better.  Then we met more MHE family the last week of October, when we had a wonderful two-day visit from Linda, Anne Marie and Johan Olav, who drove down to Florida from New York to finish their US vacation with some warm weather, before heading back to Norway! Johan was the hit of every market and store we brought him to…speeding up and down the aisles in his rainbow-decorated wheelchair, smiling at everyone and speaking his few English phrases, like "more chocolate ice cream, please!"  (We think he might have learned that one at Susan's house!).  Thanks to The MHE Coalition, we've picked up so many new members to our "extended family," and we love every one of them!
Gerry,
Iva and Bill		 Gerry, Audrey, Anne Marie, Linda
and Johan Olav
Throughout the country, more and more of our members have been meeting others.  From Washington State, to North Carolina, to Ohio, to Texas, with many more get-togethers planned.  We'll be including photos from some of these meetings in future issues.  If you are interested in meeting other families in your geographic area,
please contact  Chele Zelina  at 440-235-6325 or 440-427-9032, or email CheleZ1@aol.com.
In Memorium
Yvonne McBride was a wonderful woman and a friend to The MHE Coalition. Even though we never had the privilege of meeting her in person, as soon as she received the first MHE Coalition Newsletter, Yvonne was on the phone to Chele and me, pledging her support. She was as good as her word, contacting the experts she knew in Utah, getting us copies of research papers, having us put on the Shriners, Utah medical library mailing list.  She would call to encourage us  in our work, and also to inquire how my daughter was doing, as Nicole was going through a very difficult recuperation at the time. Despite the health problems that Yvonne was experiencing, she took the time to send Nicole an inspirational book to help her through hard times.   On behalf of The MHE Coalition,
we extend our condolences to Yvonne's husband, Don, and to the entire McBride Family.
Congratulations
As we say goodbye to one friend, we welcome to the world Noah,
born to YahooGroups member, Nicole Trevino.
Get Well Wishes
As always, our wishes for a speedy recovery go to all of our members who have undergone surgery or will be undergoing surgery in the coming weeks and months.
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