Recently, Advocate Medical Group’s Adult Down Syndrome Center launched a $5.5 million fundraising campaign: At the Center of it all. As part of our campaign, we’re sharing stories of patients who directly benefit from the generosity of donors like you. This is Chomedy’s story as told by her mother, Joanne.
Every individual is different in some degree, yet each has his or her own beautiful sound that adds depth and richness to the whole. It takes variety—sopranos and altos, baritones and basses—to make rich music. When we disparage individual uniqueness or try to conform to fictitious stereotypes idealized beyond any possible realization by social media, we lose the richness of tone and timbre that is created by a world of diversity.
We must look after the individual.
For years, Chomedy was involved in the local park district. She worked with community members in performing regular service, attended activities, and went out to eat with a group of other individuals with various handicaps. She went camping and fishing, played soccer and basketball. She was busy and loved her active social life.
One year ago, that stopped abruptly. Like the rest of us, she was quarantined and will remain quarantined until vaccinated. Her annual physical in May 2020 with the Adult Down Syndrome Center (ADSC) was over Zoom. Her doctor mentioned the possibility of joining an online group with other adults with Down syndrome that met several times a week.
Words cannot describe how grateful I am for the ADSC Zoom meetings. Chomedy, who’s 55 years old, completely manages them herself; she logs on at the right time, uses the video, unmutes, shares with others when it is her turn, and logs off. When she has assignments to prepare for a meeting, she does them unaided by me. She is learning self-reliance and independence in a technological world.
In my role as an officer of a statewide organization and local school board member, the program has helped both of us cope during these difficult times and avoid depression and anxiety.
I often wondered how the program was paid for and thought that I should donate what I was spending at the park district to the Adult Down Syndrome Center. Believe me, it is worth so much more.
The Center provides me with the information I need to better care for Chomedy’s needs. Although she is more like other individuals than different, there are positive differences that I have learned about through the Center, such as a lower-than-normal incidence of cancer. Their webinars continue to amaze me in providing high-quality information about managing the care of a very unique and funny lady.
Every person is unique and irreplaceable. The loss of even one voice diminishes every other singer in this great choir of ours, including the loss of those thought to be on the margins of society.
I thank you for making a difference through your support of the Adult Down Syndrome Center.
Since 1992, the Adult Down Syndrome Center has provided a full range of specialized health care services for 6,000 adolescents and adults with Down syndrome. Many of its programs and services are made possible through philanthropy.