Patrick Welker, a retired telecommunications executive living in Dallas, recently married into the DM community and instantly made a young friend when he developed a special bond with his new wife\u2019s 11-year-old grandson, Jack. Jack was born with congenital-onset, type 1 myotonic dystrophy (CDM). Patrick says what helps them connect is that he sees Jack simply \u201cas a young boy rather than a boy with a challenge.\u201d The two have become fast friends and spend time together working on puzzles or playing action games on the computer. Patrick views Jack\u2019s talents and challenges as\u00a0interconnected.<\/p>\n
\u201cI\u2019ll play with him, and quite frankly, I can\u2019t beat him. He has a photographic memory. That\u2019s what happens when you have challenges. You\u2019ve got some things that you\u2019re not so good at and other things that you excel in.\u201d Helping care for Jack helps take care of Patrick too. \u201cJack just has a gigantic heart. He\u2019s got a big smile on his face when he and I do puzzles\u00a0together.\u201d<\/p>\n
In DM-affected families, where children and a parent are affected, grandparents can be particularly helpful. \u201cThe grandparent\u2019s role could be, or should be, that you\u2019re providing emotional support for the parent and the child affected by this disease,\u201d Patrick says. \u201cI think it\u2019s good to have a grandparent come and say, \u2018Look, we are a family, we are all in this together; let us help\u00a0you.\u2019\u201d<\/p>\n
\u201cI look at it as a three-pronged role. It\u2019s providing time, emotional support, and financial assistance when you\u2019re able to do it,\u201d he says. Patrick knows that simply spending time with grandkids is one of the most valuable services a grandparent can provide. Not just for the kids, but for the parents too. \u201cI spend a month in California with my two grandsons during their summer vacation. They call it \u2018Grandpa Camp\u2019; nothing could be more enjoyable to\u00a0me.\u201d<\/p>\n
\u201cAs grandparents, we\u2019re providing the resource of time, which they can\u2019t get anywhere else. We can spend time with our grandchildren and give the parents a much needed break. They need some time to themselves to enjoy each other and know that their children are having fun, are safe and being taken care\u00a0of.\u201d<\/p>\n
By the time Patrick met Mollie, a Dallas native and former fashion photographer he would marry, he was no stranger to children with special needs. After he retired, he volunteered at the Children\u2019s Advocacy Center of Denton County [Texas], which serves children who have been victims of abuse, and Christ\u2019s Haven for Children, which provides foster children a home in a ranch environment in the Dallas\/Fort Worth\u00a0area.<\/p>\n
\u201cI felt that was something I\u2019d like to do with my time, and my finances were appropriate to provide whatever I could to help these children,\u201d he says. \u201cQuite frankly, I get much more out of helping these children than I probably give.\u201d Mollie was already part of the DM community. At 59 years old, she ran a half-marathon (13 miles) to help raise money for Myotonic. Then, in 2013, she helped launch the annual Myotonic fundraising program known as the Grandparents\u00a0Campaign.<\/p>\n
It was only natural for Patrick to get involved when he got to know Mollie. \u201cAfter attending two\u00a0Myotonic Annual Conferences<\/a>, I knew that I wanted to do more,\u201d he says.\u00a0\u201cLast year, all of a sudden I got the idea, why don\u2019t I start a support group? I talked to some people at Myotonic and asked how to do that. There was no support group in Dallas, so I put my energy into starting one. We had our first meeting of the\u00a0Dallas Support Group<\/a>\u00a0earlier this year [2016]. The first two meetings have been a great success with the last meeting doubling in attendance to 30\u00a0people.\u201d<\/p>\n Patrick lets the group take the lead and tries to meet their needs. I look at my role as a facilitator. \u201cThe meetings are not about me at all. I just make it happen.\u201d Patrick has found a deep sense of satisfaction in helping his own family and the larger DM\u00a0family.<\/p>\n