A DREAM Come True: March is National Down Syndrome Month
In many ways Hayes is a typical three year old boy. He loves to dance, play ball and chase his older brother around the house. Hayes also has Down syndrome. Like many children born with Down syndrome, Hayes has had several medical complications. He had heart surgery when he was five days old and spent the first month of his life in the Intensive Care Unit. He came home connected to an oxygen tank and feeding tube. Then at about six months, he began to have seizures and regress developmentally. The medication to cure him cost $71,000. Fortunately, Hayes is now healthy. Unfortunately, this story is not unusual for a child with Down syndrome. Luckily his parents had family and friends who helped them out financially. But what they also wanted was to connect with other parents who could relate.
As fate would have it, help was not far off. After finding a doctor in Bozeman that could help with Hayes’ medical complications, they scheduled a visit. Ryan Robinson, the nurse, was just who they needed to meet. Ryan has a daughter, Dylan, who also has Down syndrome. Dylan also experienced many medical complications and Ryan could relate to their story. Ryan knew a few other families that have children with Down syndrome and had been hoping to get the families together. A few months later, everyone met at the Robinson’s home. The group initially formed to celebrate the joys and concerns that come with having a child with Down syndrome. However, Ryan also shared her goals of starting a Buddy Walk in Bozeman to raise money to help families with children who have Down syndrome and putting a packet together for new parents.
All the families agreed that some sort of new parent packet for families given the diagnosis of Down syndrome for their child was desperately needed. The families that had given birth in Bozeman were only presented a pamphlet about breastfeeding a child with Down syndrome, but they all craved more information and people to turn to for help. The group began meeting every month or two and quickly their goals became realities.
Four of the families including the Robinson’s and Hayes’ parents decided to form a non-profit in order to achieve their goals. DREAM (Down syndrome Research, Education & Advocacy in Montana) was officially formed in June of 2010. DREAM’s mission is to increase the acceptance, understanding and quality of life of individuals with Down syndrome in Montana through support, education, and advocacy. The first project was to develop a new parent packet for families who are as shocked as we once were to hear the diagnosis of Down syndrome for their infant child. In addition to resources listings, the packet shares photos and stories written by six local families who have young children with Down syndrome. The first family to receive it after the birth of their child was happy to know there are resources in the community and to know they and their new child are not alone.
DREAM’s second goal is to assist families with ensuing medical bills. DREAM provides funds for families who have difficulty paying for the various expenses associated with Down syndrome, whether that is multiple therapies, adaptive equipment, or other related needs. In order to raise money, the first annual Bozeman Buddy Walk was held on September 10, 2010. The Buddy Walk is a national walk with 250 cities participating in 2010. The goal of the walk is to raise awareness for people with Down syndrome and to show what active members they are of their local communities.
Over 350 people turned out to raise $7500.00 for this first time event in Bozeman. The day was a huge success consisting of a 1 mile walk lead by local celebrity Julie Bertelsen, the MSU dance team, and Champ. The finish line was followed by food and drinks generously donated by local businesses. The auction to follow included everything from bikes, to a night stay in Big Sky including dinner, and skiing.
“We are just starting to discuss this years Buddy Walk and are happy to say with the donations from last years walk that this year we will have an advantage that we didn’t have last year, because we have some money already set aside to help put on this years event. To be part of something from the ground up has been such an emotional journey” says Ryan Robinson. “The day my daughter Dylan was born I had so many fears and worries. Now four -and- a-half years later all I can think of is how lucky am I? I always say she is the one thing I never knew I needed and now she is the one thing I can’t live without. She has taught me patience although not always easy, she gets it done just at her own pace and on her own terms. She is independent and very social.”
In January, the first grant applications were approved and DREAM wrote checks totaling $2500 to help two Montana families with medical expenses relating to their child having Down syndrome. “As parent of an ailing child you want to put all of your energy into helping your child become well, not worrying about how to pay the bills. It is so gratifying to be able to help another family after experiencing that stress in my own family,” Julie Kleine, Hayes’s mom, comments.
The next grant application cycle will close in May and DREAM hopes to help more families, but another project is also on the horizon. Julie Bertelsen, a Bozeman woman who has Down syndrome, joined DREAM’s Board of Directors last fall and is working with the board to pursue her goal of providing a tutoring program for adults with Down syndrome.
DREAM also continues to meet bimonthly as a support group. The families are grateful for the support and acceptance of their children in this community, but are also excited for the community to benefit from the gifts their children bring as well. Already they are bringing joy and delight to the many lives they touch. Visit DREAM’s website to learn more at: www.dream-mt.org.
About Down Syndrome
Down syndrome is a chromosomal anomaly that occurs in 1.3 per 1000 births. For some unexplained reason, an error in cell development results in 47 chromosomes rather than the usual 46. The extra gene material slightly changes the orderly development of the body and brain. About 5000 babies with Down syndrome are born in the United States every year. The national population of individuals with Down syndrome is estimated to be 250,000.
About 80% of babies with Down syndrome are born to mothers under the age of 35. About 1 in 400 babies born to women over 35 have Down syndrome.
People with Down syndrome are more like typically developing individuals than they are different. There is great diversity within the population in terms of personality, learning styles, intelligence, appearance, compliance, humor, compassion, congeniality, and attitude. Favorite pastimes vary from person to person and range from reading and gardening to baseball and music, and beyond.