Community to climb for a cause

Members of San Diego’s Down Syndrome (DS) community are reaching up and out in honor of World Down Syndrome Day with an indoor rock climbing fundraiser that will also include a health and wellness fair, prizes, entertainment and children’s activities from 11 a.m. to 3 p.m. March 21 at Solid Rock Gym, 13026 Stowe Drive in Poway.

This family-friendly celebration is being hosted by DS Action, a nonprofit organization that serves as a resource to families and individuals in San Diego living with DS, in conjunction with Rady Children’s Hospital. Rady’s houses the Pediatric Down Syndrome Center, a specialized facility offering multidisciplinary assessments to children ages 0 to 5 with Down syndrome, a project pioneered by DS Action in 2008 and the beneficiary of funds raised by this event.

“We need to sustain that center and that costs us roughly $70,000 a year,” said Sharla Hank DS Action president and mother of a 4-year-old son with DS, who calls the center the organization’s “first major accomplishment.”

Hank of La Mesa, one of the founders of DS Action, stepped into the presidency this year despite dealing with her son’s diagnosis of leukemia in 2008, just prior to his third birthday. They are only halfway through the three-year course of treatment, but the entire family, including Hank’s husband Mike, who is a board member, Adam, and 22-month-old daughter Nicole remain dedicated to making a difference.

“It is an emotional roller coaster,” Hank said, “but I think my husband and I realize not only the importance of taking care of family but helping others.”

Hank said 2010 will be an exciting year for DS Action. The organization wants to expand those served by the Down Syndrome Center at Rady’s to include adolescents and adults.

“We would like it to be medical support,” Hank said, “I think that has been our forte.”

Brenda Rangel, whose 3-year-old daughter Eileen has Down syndrome and was also treated for leukemia, recently moved to Carmel Mountain from the Modesto area. Connecting with DS Action linked her family up not only with comprehensive, specialized medical resources but a much-needed sense of support, acceptance and belonging.

“Sometimes not even in your family can you find that bond because of having a special-needs child,” Rangel said.

The World Down Syndrome Day event was organized both to raise awareness about DS and to promote opportunities for local corporations, businesses and individuals to get involved.

Carmel Valley resident Natalie Trelease has been an avid supporter of the organization since meeting Adam and his family at the Rady Children’s Hospital Celebration of Champions at Seaport Village in April 2009.

“After spending a few hours with the Hank family, I learned of the local nonprofit they helped to establish in San Diego,” Trelease said. “I have always had a passion for philanthropy and feel that it is a way to not only connect with the community but also with your own heart and soul. Before I left the event, we had exchanged contact information and I committed to helping in whatever way I could.”

Trelease, manger of financial controls at CareFusion, which has sponsored DS Action projects, joined the board last October as the finance/audit chair.

“Many children with Down syndrome do not receive the same level of recommended medical and developmental care and parents often find it difficult to get referrals to a variety of available intervention services,” Trelease said. “To meet this need, DS Action worked to establish a Down Syndrome Center, where all children with Down Syndrome have an equal opportunity of receiving recommended evaluations, referrals and intervention services. The center serves as a source of information, education, inspiration, and most of all — hope.”

What is Down syndrome?

Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies.The physical features and medical problems associated with Down syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead healthy lives.

— Source:

Kidshealth.org

On the Web

• Down Syndrome Association of San Diego

www.dsasdonline.org

• National Association for Down Syndrome

www.nads.org

• National Down Syndrome Society

www.ndss.org

• Down Syndrome International

www.ds-int.org