A Family Perspective

Over time, the Alliance will feature the personal experiences of a family in need and how their interaction with Alliance members helped change their circumstances and improve their lives and enjoy a more prosperous future.

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Adan & Marisela

A beautiful 4 month old, Adan, and his mother, Marisela, were the guests of the Maricopa Family Support Alliance meeting on September 27, 2013. Marisela told her story about Adan’s diagnosis of Down’s Syndrome. She said it was very difficult for her in the beginning when he was born; at her first visit to her pediatric medical home clinic she was completely overwhelmed. Marisela was met by a welcoming pediatrician and our own Stacy Moreno, who became her Care Coordinator. Marisela found ongoing support from her Adan’s Care Team. Stacy and Marisela were able to organize all of Adan’s paperwork into a medical binder so that she could keep everything involving his medical paperwork, visits, and community resources all in one place. She also found hope when she was referred to, and then joined the Sharing Down Syndrome Spanish Speaking Support Group, made up of other families like hers. Joining this group not only helped her learn how to navigate resources and build a natural network of meaningful support , she joined a group of families, raising money and awareness, and walked in the Sharing Down Syndrome Walk this past month. She even encouraged all the participants to consider joining future Sharing Down Syndrome events and to walk with them in upcoming years. The mom said that she wants to give back to other families when their babies are born, providing support to them as they welcome a baby with Down Syndrome into their families. Marisela thanked all the people present for their help that they provide to families. Two people in the audience thanked Marisela for sharing her story and thought it was great that she also wants to give back to other families. One of Marisela’s friends came to support her and take pictures of her and her baby as she told her story. She was the anchor for Marisela when she was introduced to the Spanish parent support group, and chronicled this huge milestone in her life, as this was the first outreach and advocate role, of very many, that she will have. Our lessons learned:

Providing the following supports made a huge difference for this family:

  • A welcoming, supportive environment
  • Support in organizing the medical / service records
  • Connection to others