Unbalanced Translocation Trisomy 21 Parent Support

When precious Lilly Martin was born in March 2010, parents Erin and Brent were initially shocked by their daughter’s diagnosis of Down syndrome.

But shock quickly gave way to complete adoration as love blossomed and they brought her home to big brother Tanner, finding their way as a family of four.

Lilly was eventually diagnosed with Unbalanced Translocation Trisomy 21, which is rare and a genetic form Down syndrome, impacting only one in every 25,000 babies.

Within days of Lilly’s birth, Erin received a call from Tracie Hoppis, the Parent to Parent Coordinator at Children’s Village. Tracie connected Erin with other families in the Valley who have children with Down syndrome and invited her to join a parent support group called Holland.

“At first all this information is coming at you and you’re in this cloud,” Erin said. “But I decided to join the support group because I wanted to connect with other moms who have kids with Down syndrome or other special needs; it’s a sense of camaraderie that’s really special.”

Living in Sunnyside, Erin made the weekly trip up to Children’s Village in Yakima to attend Holland, a support group for families facing a new diagnosis on behalf of their child. (Families can still participate in Holland if their child does not have a ‘formal’ diagnosis but has some sort of special healthcare need). The eight week course is facilitated by a trained coordinator and often the group bonds tightly through sharing their experiences.

“When you are a new parent and your world has been rocked and you don’t know where to go, a place like Children’s Village is essential,” Erin said.

Due to the popularity of the Holland groups, a new group called Holland Reunion has been formed to give families a chance to continue to connect and support each other after the formal program wraps up. Erin is an integral member of this group, coordinating communications and supporting new members as they join the group. Erin also sits on the Parent to Parent Advisory Board at Children’s Village.

“Fellow parents are the best resources,” she said. “My eyes were opened to what Lilly needs and what I need to advocate for. They have been unbelievable resources to me as we’ve embarked on this journey.”

To learn more about the Parent to Parent program at Children’s Village, call (509) 574-3200 or click HERE for more information.

 

 

 

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