Meet this year's Tree of Hope Spokesfamily, The Etheridge Family! Mother, Jessica shares about the importance of the supports DSC offers and how they have not only impacted their three-year-old daughter, Avonlea, but their entire family. Read the full story at https://www.dsc-illinois.org/events_fundraisers/treeofhope/
"When the doctor gave us the name of our tiny new baby’s diagnosis, all I could feel was fear. Cardio Facio Cutaneous Syndrome (CFC) is a very rare genetic condition that affects less than 800 people worldwide. After a quick Google search of CFC, the fear only grew as we read through the 20+ medical complexities, such as seizures, congenital heart defect, delayed growth and development, intellectual delays, and unknown life expectancy. Our hearts still ache remembering how in a moment all the dreams we had for our daughter were pulled out from underneath us.
But what Google didn’t tell us was that there’s an incredible community in which we suddenly became a part of that would embrace us as we walked this unexpected journey. We didn’t know there were organizations like DSC that would surround us with support, resources, encouragement, and guidance.
DSC, in particular, has come alongside our family in so many different ways. Since we received her diagnosis in January 2020, we were limited on the resources we could access. However, DSC jumped in and helped us coordinate respite services, which has been crucial for our marriage and mental health. They provided an adaptive chair—critical for postural support for Avonlea that our doctor prescribed and insurance denied twice. They have also provided incredible therapists that have brought expertise into our home, helping us learn how to continue therapy strategies throughout the week.
Also, with the help of DSC, we recently received an augmentative and alternative communication (AAC) device for Avonlea. Using head movements to make on-screen selections, Avonlea is learning to communicate with individual family members and engage in conversations, enhancing her ability to interact with people around her, and build relationships.
We now have a broader vision to see so many more kids and families like ours that are on this unpredictable journey of disability. Organizations like DSC make it possible to press on through the challenges, better equipped with therapy, community, and financial support. We are thankful for DSC and hopeful for Avonlea’s future.
Please help light the way for our family and many others by making your Tree of Hope donation today!”
Visit https://www.dsc-illinois.org/get_involved/donate.html to make your Tree of Hope contribution.
