Buddy Walk | October 19th
Liliana Acosta is a beautiful 13-year-old girl with long brown hair, a ready smile and twinkling eyes. She loves to sing and dance, and adores all things ‘princess’ related. Lily was also born with an extra 21st chromosome; a condition medically termed Trisomy 21, or as most people know it, Down syndrome. “The day Lily was born was the day I found out she had Down Syndrome; I had no clue before then,” says Mom, Natalie Acosta. “In the weeks that followed, I immediately went on-line to the National Down syndrome Society’s (NDSS) website for information and support.” Natalie explains that as each year passed, she and her entire family (which also includes Dad, Adrian, and six-year-old brother, Diego) have become more involved with DSA, especially at the local level.
Down syndrome occurs when a baby is born with an extra 21st chromosome; this alters the course of development and causes such things as low muscle tone, mild to severe cognitive delays, small stature and an increased risk for a myriad of medical conditions. For example, Lily also suffers from Celiac Disease and Perthes Disease, which, affects her hips, and has led to two surgeries. Each year, approximately 6,000 babies are born with Down syndrome and there are 400,000 people living with the condition in the United States alone.
It was through NDSS along with area hospitals that the Acostas learned about the Early Childhood Intervention (ECI) program, which provides children ages three months through 3 years with medical support. “Lily received occupational, physical, and speech therapy through ECI,” states Natalie. “When she turned three she began the Pre-School Program for Children with Disabilities through the Public School System. Lily loves school and the whole school loves and supports Lily,” says Natalie. “She does have her bad days just like any other kid, but most of the time when I pick her up she tells Diego and I about every detail of her day with a huge smile on her face.”
Zeke, finishing strong with his team - Zeke's Entourage
Another program the Acosta family became involved with from early on is the 21 Dreams DSA’s Buddy Walk®. In fact, this year Natalie served as Event Director. The Buddy Walk® is held annually each October during Down Syndrome Awareness Month. The first event began in 1995 with 17 walks held across the country. Today, the walk raises $13 million and boasts close to 400,000 participants worldwide. Anyone can take part in the mile-long walk; it’s open to all ages, from strollers to seniors. One misconception about the benefit is that you must know someone with Down syndrome to participate. According to NDSS, the concept behind the walk is to promote support and inclusion of people with Down syndrome in their local community.
Planning for this year’s fundraiser began last February. Local event founders saw such a great turn out at the first annual walk, they sought out a bigger space for future events. Enter Mission Fitness, a wellness center affiliated with the Medical Center Health System. “We were approached by organizers,” says Mission Fitness General Manager John Douthitt, “and were happy to donate the space. We like to be involved with the community and give back to the area we serve.”
Team Zeke's Entourage
And Mission Fitness wasn’t the only business to donate – from food to bounce houses, face painters, to live music and equine therapy – the day was jam-packed with activities for all ages. “I can honestly say, every business I asked to sponsor responded with a yes,” states Natalie. “The community has been 100 percent behind us and their support has been overwhelming!” In addition to support from the business community, local organizations also donated their time and talent. Volunteers ranged from physical therapy students at Texas Tech University’s Health Science Center Permian Basin Campus, to local college sorority members to band members from area high schools, to members of the Midland Police Department’s Blue Knights Motorcycle club. Additional volunteers included members of area organizations that made up the event’s Resource Fair, such as the Department of Again and Disability Services, the P.E.N project, Early Childhood Intervention Program, the Bynum School, Sharing Hands Respite group, Midland Autism Resource Center and H-3 Equine Therapy.
A few of Team Princess Kate's Krew
Walk participants were asked to start or join a team online and begin registering sponsors and collecting donations. Lily’s team - named Team Tiger Lily, totaled 153 members including family and friends. More than 12 teams participated in the walk, along with others who showed up that day just to walk and lend their support.
Team Ziyah's Lil' Mermaids
It’s estimated there are more than 75 families with a child with Down syndrome in the Permian Basin alone. Team Nicky’s Knights supported the Rodriguez family and their six-year-old son, Nicholas. Nicholas is the youngest of seven children and loves taking part in the annual walk, says Mom, Janice Rodriguez. When Nicholas was two, Janice founded the Permian Basin Down syndrome support club, which eventually gained its non-profit status, and grew into the organization it is today. Janice currently serves as 21 Dreams DSA, President. “I think what’s great about our organization is that it’s gotten our family involved with other parents and children with Down syndrome. We support each other and answer questions for each other.
Nicky meeting the very special pony from H3 (Horses, Hearts & Hands).
I’ve made so many close friends because of this group that I wouldn’t have had otherwise.” Nicholas who is a third-grader at Midland I.S.D.’s Santa Rita Elementary School also benefits from 21 Dreams. “The monthly get-togethers, such as, Kids Night Out, enable him to interact with other kids who are just like him,” says Janice. “If he’s experiencing sensory overload everyone understands- it’s a place where Nicholas can be himself.”
Most of Team TigerLily
Natalie agrees, “The families in 21 Dreams have the same fears and concerns and celebrations when our kids hit those milestones. This organization has enriched and blessed our lives because of the friendships we’ve made and especially the friendships our children have made.” In addition to Kids Night Out, funds raised through Buddy Walk® are also used for the annual Christmas Party – a catered event, featuring Santa and presents for every child in attendance (siblings included.) The group also holds a festival to celebrate World Down Syndrome Day each March 21st and recently held a Mom’s Night out featuring Paint on Canvas, as well as, Dad’s Day at an area gun range.
A smiling AJ from AJ's Cowboys.
Most importantly, money raised is used to help alleviate area families’ medical expenses. Because most children with Down syndrome are at an increased risk for other health problems, medical costs can add up. According to Janice, whether it’s a prescription, medical device, such as a walker, or a medical procedure, the organization helps supplement these expenses. †