Buddy Walk supports Maine Down Syndrome Network families

The Small family of Windham includes, from left, Bailey,
Elizabeth, Shawn and Madilynne Small.
COURTESY OF ERICA SHIRLEY PHOTOGRAPHY

By Ed Pierce

As the 21^st anniversary of the Buddy Walk supporting the Maine Down Syndrome Network wraps up this weekend at the Saco Drive-In Theater, an awareness and acceptance of those with Down syndrome is the goal of this year’s initiative in Maine.

October is Down Syndrome Awareness Month, and the Buddy Walk helps raise money for the Maine Down Syndrome Network, which support education and advocacy to its members and to local communities, such as Windham and Raymond.

According to Abby Pearson of the Maine Down Syndrome Network, the Buddy Walk is a family reunion and a birthday party, a dance and a carnival all rolled into one.

“Everyone is happy,” Pearson said. “Joy is actually palpable in the air. Hundreds of people come together to celebrate the Down syndrome community in Maine, and to raise money for Maine Down
Syndrome Network.”

Down Syndrome is a condition in which a baby is born with an extra chromosome. Typically, a baby is born with 46 chromosomes, but babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. This extra gene changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby. Each year, about 6,000 babies born in the United States have Down syndrome, or about 1 in every 700 babies.

Elizabeth Small of Windham is the parent of a child with Down syndrome and is grateful for the support her family receives from the Maine Down Syndrome Network.

“Our daughter, Madilynne, has an extensive medical history.  She has had multiple surgeries on her heart, ears, and digestive system,” Small said. “With many hospitalizations it is impossible for my husband and I both to work.  It is challenging to find a caretaker for her if we both were to work especially during school vacations and when she is ill and misses more school than the average child. We have to juggle multiple doctors, therapists and specialists that we see on a regular basis.

Small said that when Madilynne had her first heart surgery at 2 months old, she and her husband lived in Casco.

“We spent every waking minute at the hospital, and we were staying at the Ronald MacDonald House in Portland. She had been in the hospital a week already and we weren’t sure when we were going home.  A former board member came in and introduced herself.  She then handed us a card with a gift certificate for a restaurant right down the street,” Small said. “Shawn and I were able to leave the hospital with the peace of mind of not being too far away and have a meal together.  They gave us a sense of normalcy in the middle of so much chaos and fear.  Over the last 12-plus years they have been a support with mom’s night out, Buddy Walk, and numerous Facebook messages or emails just asking questions that only other parents and caregivers can understand.  I have shared my experiences with others as well as heard what others have to offer.  It really is a community like no other.  I have gained lifelong friendships that I will cherish.”  

According to Small, being the parent of a child with Down syndrome is a special experience.

“It is a different ride for sure, but it is amazing.  This is not the life we envisioned when we decided to have children, but we are so grateful to have this life and wouldn’t trade it for the world,” Small said. “Maddi is just like everyone else. She has a younger sister Bailey and she wanted to share that it is fun to be with people who have Down syndrome.  She gets a lot of love from Maddi and that is what matters.”

For Crystal Cochran of Windham, being the parent of a child with Down syndrome meant finding a proper balance in life.

 “We have had to overcome many challenges along the way. Balancing family and work during the beginning years was hard because of therapies and medical appointments. Finding reliable childcare is also a struggle as the child gets older,” Cochran said. “I have been lucky with lots of family members in the area that most of the time they can cover but there are those times that family cannot, and childcare centers don’t take older kids that are in middle or high school as most children at that age can stay home alone.”

According to Cochran, support and acceptance have been her family’s two biggest needs and that includes support from her family, extended family, and people in the community.

“We could not always stay at functions or go someplace because of appointments, therapies or even because Austin was done,” Cochran said. “We have had the support of countless professionals along the way to overcome health related challenges or educational challenges. Acceptance has come from family members who have treated Austin like any other child. A community both within the Down syndrome community, the school community and the community that we have called home that have all accepted Austin as a member and supported his growth.” 

 

She said that the Maine Down Syndrome Network has helped her family from the beginning.

“They reached out after I had Austin and told me about their organization and the activities that they had to help support our family. We have gained some great friendships through this organization as we raised our children together. We were able to make connections, share ideas, share struggles, and share the joys,” Cochran said. “They have helped educate me through workshops. This organization helped lift me up when we were not sure what was going to be happening as we were given the news that our baby was going to have Down syndrome. When we didn’t know where to turn, we found them and without the support and education we would not be where we are today. The community should support them because they support so many families that are in the same position as I was 20 years ago.”

 

Cochran said that one of the most important things she would like everyone to know is that above all else, Austin is his own person.

“With help from all who love and care for him, he can overcome obstacles and has grown into a wonderful young person,” she said. “While many individuals with Down syndrome may have common traits, each individual is their unique self in their own way. We would like everyone to know that all individuals with Down syndrome need the support and acceptance of everyone around them but with this they can reach their fullest potential.”

 

The 21^st Maine Buddy Walk will be at 4:30 p.m. Sunday, Oct. 17 at the Saco Drive-In Theater.

To learn more about the Maine Down Syndrome Network and to make a donation please visit www.dsmaine.org <