The Freres Family
Meet Charlotte, our beautiful little wonder! Charlotte is almost three years old, and she is full of life. She loves being outside for picnics and play. Splashing in the water is sure to bring smiles. Doing anything with her big sister brings big fun. She is seldom seen without her stuffed Dolly. Charlotte is a fun-loving child. She is also a courageous and resilient little girl.
We were overjoyed in early 2017 when we discovered a new baby would be joining our family. Like many families, we looked forward to learning Charlotte’s gender in utero. As we sat smiling and laughing while waiting for the technician to begin the anatomy ultrasound, little did we know that day would change our lives forever. Our smiles turned to worry when the technician left the room to get a doctor, and our worry turned to despair as the doctor told us something was wrong with our baby girl’s brain.
What did that mean? Even our doctors were not immediately certain. They encouraged us to travel to Cincinnati Children’s Hospital in Cincinnati, Ohio, to get their opinion. We soon learned that Charlotte had a severe form of spina bifida called myelomeningocele. This meant her spine had not fully closed, and she would need surgery shortly after birth to repair spinal tissues protruding from her back. While the surgery could close her back, it would not restore normal function. Charlotte would have lifelong complications from the damage to her spine. Charlotte also had severe hydrocephalus, a condition where cerebrospinal fluid floods her brain, pushing all the brain tissues to the edges of her skull, and destroying the traditional structure of the brain. She would need a shunt placed in her head throughout her life to drain the fluid from her brain, but the damage would be permanent, and that damage meant developmental delays, frequent seizures, and other complications. We later learned that Charlotte also has an unrelated genetic condition called DiGeorge Syndrome which causes developmental delays, physical abnormalities, and a compromised immune system, among other issues.
While we knew the source of her issues, nobody could give us an accurate prognosis for Charlotte’s life. The doctors seemed to be preparing us for the worst. Days before she was born, Charlotte’s maternal-fetal medicine doctor told us Charlotte’s hydrocephalus had become so bad that it was difficult to find her brain tissue at all on the ultrasounds. But Charlotte is tough, and she persevered. She had brain and spinal surgery within days of her birth, and she spent weeks in the NICU at Cincinnati Children’s Hospital.
The drive home from Cincinnati with Charlotte strapped securely in a car bed (her head was too large for a normal car seat) was filled with uncertainty. We felt lost. Like every parent, we wanted to give our little girl every opportunity to thrive throughout her life. How could we do that given her unique circumstances? How could we ensure Charlotte had as much access to the world around her as possible? We soon learned we were not alone—there are wonderful people who dedicate their professional lives to helping children like Charlotte maximize their potential. People like Barb, Charlotte’s speech and feeding therapist, and her colleagues at DSC.
DSC has been there for Charlotte and our family through ups and downs. While Charlotte started babbling and cooing like normal babies early in her life, her medical conditions seemed to combine to complicate her life in new ways. Her DiGeorge Syndrome means her immune system is subpar, and as she continued to get sick, those illnesses triggered prolonged seizures and frequent visits to the emergency room. Making matters worse, Charlotte often stops eating and drinking like normal when sick. As Charlotte’s seizures worsened, her babbling stopped, leaving us with difficulties interacting with our little girl.
While Charlotte still does not talk, her speech therapist Barb has helped us find ways to connect with our girl. We read body language and use signing to interact with Charlotte. She has signed “all done,” “mama,” “dada,” and “more,” among other basic words. We treasure the times we see her sign “happy.” Barb has also helped us with speech devices, which will allow Charlotte to use pictures on buttons to vocalize her thoughts. She has also helped us find ways to introduce new foods to Charlotte, which ensures she is getting proper nutrition even when she is sick and tries to stop eating. Through Barb and DSC, Charlotte is learning to interact with the world around her through any means her conditions will allow.
There is joy in DSC’s mission. Barb works with Charlotte weekly, and from the moment she first met Charlotte through today, Barb has shown infectious enthusiasm and a tireless dedication to Charlotte’s progress. When the COVID-19 quarantines began, Barb was immediately on the phone devising new ways to continue Charlotte’s weekly therapies, and Charlotte has continued her positive progress despite the disruptions. Even outside her therapy sessions, Barb will randomly drop activities at our front door to help Charlotte work on her speech and feeding. Barb has been an irreplaceable blessing for Charlotte and our family.
Charlotte has been welcomed into DSC’s Individual and Family Support Program. This means she will continue to see Barb and another developmental therapist even after she ages out of Early Intervention services. DSC will also be helping our family through respite care for Charlotte—essentially a professional who can care for her several hours per week, which allows us time to work on other aspects of Charlotte’s care while knowing she is in the hands of a trusted individual who knows about her unique care and needs.
It is difficult, and often overwhelming, knowing how much our little girl will struggle throughout her life. Nothing will ever come easy for her. Charlotte is a happy little warrior though, and with the help of DSC and professionals like Barb, Charlotte is progressing and gaining more access to the world around her each day. Knowing the struggle that preceded it, we celebrate even the smallest of Charlotte’s victories. In helping Charlotte’s progress, DSC has given us many reasons to celebrate. The joy in DSC’s mission has led to joy in our lives. We are excited for what Charlotte’s future holds, and we are forever grateful for DSC’s commitment to providing services and support to children and adults like Charlotte with intellectual and/or developmental disabilities. Join us in donating to the 2020 Tree of Hope Campaign.
Please help light the way for our family and many others by making your Tree of Hope donation today!
Recognition Award Winners
Every year, DSC likes to give out awards to people and businesses in the community who have gone above and beyond with working with DSC and the people we serve.
Congratulations to the 34th annual award winners:
Employer of the Year: Planet Fitness Urbana
In recognition of their commitment to employ people with disabilities.
Special Recognition Award: ESS Clean, Inc.
In recognition of their commitment to DSC’s mission.
Personal Achievement Award: Mr. Thomas Mustered
In recognition of his outstanding personal achievement.
Thank You Sponsors
Without the support of our sponsors, the Tree of Hope would not be the success we have come to truly appreciate and value! The sponsors for the Tree of Hope Campaign, completely underwrite the cost of the campaign, allowing every donated dollar to go directly to services and supports for the individuals and families in our community.
DSC Corporate Sponsors take their commitment one step higher. As a result of the level of their sponsorship donation, they have pledged to become a partner with DSC in helping us fulfill our mission. These companies and/or foundations will be recognized at every DSC fundraiser as they truly are our partners.
Level I Sponsors
In addition to the Level I sponsors, we also value each and every sponsor who supports the Tree of Hope campaign.
Level II Sponsors include: American Dowell Sign Company, Roger & Jane Webber, and UpClose Printing
Level III Sponsors include: Busey Bank, Christie Foundation, Commerce Bankshares Foundation, Cozad Asset Management, Inc., Curtis Orchard, Farm Credit Illinois, Greater Champaign County AMBUCS, Health Alliance, Kevin & Nancy Sullivan, Premier Print Group, Reynold's Towing Services, Sweet Pea Photography, and TSM Ventures, Inc.
Level IV Sponsors include: Advance Auto Parts, Bank of Rantoul, Bartell Powell LLP, Body N' Sole, CMI, First Federal Savings Bank of Champaign-Urbana, Hickory Point Bank & Trust, Hudson Drug & Hallmark Shop, Kelly Griffin, Lynn Rule, Northwestern Mutual: The McClure Financial Group, Shields Auto Center, Steve and Carol Kamradt, and USI Insurance Services.