Our daughter, Brooke, was diagnosed with a rare genetic disorder called Cohen Syndrome in May 2013. I do not remember exactly when we first heard about Encircle Families, but I know it was very early, around the time we received her diagnosis.
I remember speaking with someone who was incredibly helpful and shared a wealth of information. We were just beginning our journey. After the dust settled, I took more time to read through the materials and resources they provided. That information has been a tremendous blessing to our family. Encircle Families has guided us in so many areas of our daughter’s care, from IEPs at school to understanding health insurance, changes in Arizona policies, and programs available to support her needs.
Encircle Families has been a steady source of support as we searched for answers. We always know who to call when we feel overwhelmed. They not only understand how to help from a practical standpoint, but they also offer the compassion we need. The daily challenges can add up quickly, and having someone who truly understands makes all the difference.
Encircle Families has also given me the opportunity to give back. When you are caring for a child with complex needs, it is easy to become consumed by your own circumstances. Through Encircle Families, I received training to become a Parent Leader. That training prepared me to support other families as a coach, mentor, and listening ear. I have also had opportunities to attend conferences and present at meetings for families of children with complex healthcare needs. Sharing our story allows me to make an impact not just for our family, but for others as well.
Through this experience, I have gained insight into the resources families need and how we can overcome the challenges we face. Too often, families feel like they have to fight for services. Many do not have support in learning how to advocate effectively. Advocacy means working with professionals and programs to find solutions that benefit everyone, not working against them.
I feel fortunate to collaborate with others and work toward shared goals. As a Parent Leader, I continue learning about self advocacy and how, by working together, we can create positive solutions. All of this has been made possible by Encircle Families. They truly understand the journey of raising a child with complex healthcare needs.
One of the things I appreciate most is that Encircle Families is always there. In the beginning, they were quietly present as we navigated the overwhelming reality of a new diagnosis. As time passed and I wanted to learn more and do more, they remained by our side. They continue to help me become a stronger advocate for my daughter and for other families. It is an invaluable gift, and one for which I will always be grateful.
If Brooke’s story resonates with you, we invite you to be part of that steady support for another family.
