Mark Leach and Stephanie Meredith have a lot in common: They're each incredibly passionate, they each have a child with Down syndrome and both have resumes of providing life-changing education for parents of children with a prenatal or postnatal diagnosis of Down syndrome.

Like me, many parents of children with Down syndrome find themselves drawn to advocacy. I'm honored to introduce you to two parents who have helped me understand what it means to advocate — and who are making a difference every day.

Mark W. Leach

Mark is an attorney with a master's degree in bioethics. He and his wife of 13 years live in Louisville, Kentucky, with their two children: Juliet, age 9; and James, age 7. Juliet has Down syndrome. When Juliet was still a toddler, Mark was invited to attend the very first Affiliates in Action conference.

Mark Leach family

"This conference was held just a month after the American College of Obstetricians & Gynecologists (ACOG) had announced the change in practice guidelines such that every expectant mother was to be offered prenatal testing for Down syndrome," Mark explains.

"I raised my hand and identified this as the number one issue that the Down syndrome community must address. With prenatal testing becoming more widespread, as it is currently administered, more pregnancies could be expected to be terminated following a prenatal diagnosis, and the population of individuals with Down syndrome would become progressively smaller."

Mark says that moment helped him realize his vocation. Today, he authors DownSyndromePrenatalTesting.com and travels internationally and throughout the U.S. speaking to families and policy makers about prenatal testing.

I wish I had time to...

Mark Leach: "Advocate on issues concerning the administration of prenatal testing for Down syndrome as a full-time job. It's such a big issue that it needs that focus. And, also, I would want the ability to then spend my evenings and weekends with my family, instead of writing as I am now in my kids' bedroom as they fall asleep."

allParenting: What do you wish more people knew about parenting a child with special needs?

ML: "[In the book Outliers, Malcolm] Gladwell writes about how it takes 10,000 hours to really become an expert at something. While I think every parent feels like they never know if they're doing everything exactly right, I'm comforted knowing that I will have had the time raising my daughter to prepare me for much of what I initially worried about… ."

"Yes, having a child with special needs poses its challenges, but you will have the time to become an expert at raising your child, and there will be a legion of people there to support you, if you let them."

What others say^ "Mark is dogged in his passion not only for his own daughter but for all people with Down syndrome," says Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital. "I admire the fact that he shares his opinions and welcomes others to do so. Only through open and honest dialogue will the Down syndrome community continue to make progress, and, in that spirit, Mark keeps everyone talking."

Stephanie Meredith

Stephanie Meredith is the medical outreach director for the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky's Human Development Institute. She and her husband, Justin, have been married 16 years and have three children: Andy, age 13; Kate, age 11; and Lily, age 7. Andy has Down syndrome.

Meredith Family- Down syndrome advocates

"The moment I first felt empowered to be an advocate happened in 2000 when Andy wasn't quite 1, and I read an article by a couple of women… who went to Russia in an effort to reduce institutionalization and share the potential of children with Down syndrome. This touched me profoundly, and I felt like I had to do something… ."

Stephanie and Justin worked tirelessly to get Babies with Down Syndrome translated into Russian and distributed at baby hospitals in Moscow.

"This was the first time I felt the passion to change the way a system worked by making the necessary contacts and partnerships, formulating a plan and seeing it through from start to finish," Stephanie says. "For me, advocacy is about changing whole paradigms, and my particular niche is helping new and expectant parents."

A timeline of dedication

2008:

  • Authored the Lettercase Understanding a Down Syndrome Diagnosis book and Delivering a Down Syndrome Diagnosis bi-fold for medical professionals
  • Developed Down Syndrome Prenatal Outreach Program

2010:

  • Co-authored Diagnosis to Delivery: a Pregnant Mother's Guide to Down Syndrome and Your Loved One Is Expecting a Baby with Down Syndrome
  • Co-founded Down Syndrome Pregnancy

2011:

  • Traveled to Russia to talk with government, university and support group leaders about how to move from institutionalization to inclusion in Yekaterinburg and Moscow

"It's truly humbling and rewarding to meet a mom halfway across the country whose baby is 6 months old and in the hospital for AVSD repair who says your pregnancy book was the lifeline she needed during a difficult time," Stephanie shares. "That's when all the effort feels like it's worth it."

Advocacy affects family

"Advocacy is fulfilling, addictive, life-changing and the single hardest thing I've ever done, far more difficult for me than parenting," Stephanie explains. She shares advice for advocates:

  • It's so important to pace yourself, find funding that also includes a salary when you start working more than 10 to 20 hours per week so that it doesn't take such a toll.
  • Force yourself to take time for your marriage and children.
  • Find true friends who are advocates that implicitly understand.
  • Develop a thick skin for the politics that are part of any advocacy effort. When you're making a difference in the world, people will love you and hate you.

Favorite resources

"I really rely on DownsEd, Woodbine House and good friends at this stage with a teenager in middle school," Stephanie says.

allParenting: What do you wish more people knew about parenting a child with special needs?

SM: I wish more people knew that each child with a disability is an individual with unique challenges and strengths that can only be discovered by truly getting to know them. They can't be wrapped up in a neat little bow with a trite description.

What others say^ "[Stephanie] works tirelessly with Down syndrome associations, physicians, geneticists and parents to provide fair and balanced materials to couples so they can make informed decisions about their pregnancies," says Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City. "Her passion is contagious and her commitment is unparalleled."

Read more about Down syndrome

Parents, experts react to Down syndrome research breakthrough
Having a sibling with Down syndrome
The truth about my child with Down syndrome

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