In honor of Clara, we created a page to benefit the National Tuberous Sclerosis Association, Inc. The TSC Alliance is dedicated to finding a cure for Tuberous Sclerosis while improving the lives of those affected. If you wish to celebrate Clara with a gift, kindly consider contributing to this cause that means so much to us. All funds raised will go directly to The TSC Alliance. Not only would a donation of any amount impact Clara's life, but it will also help every person living with TSC. By sharing, we want to raise awareness about an uncommon disorder and hope that one day there will be a cure for Clara.
Clara's Story:
Clara experienced her first seizure on October 20, 2021. Just a month and ten days after celebrating her 1st Birthday, we found ourselves in an ambulance heading to the Highland Park Hospital Emergency Room. After Clara recovered from Status Epilepticus, a prolonged seizure that lasts longer than expected, we awaited the results of her CT scan. We did not know it at the time, but the results of that scan led to a diagnosis that would change life as we knew it.
Clara was transferred that night to the PICU at Lutheran General Hospital. After several tests, scans and a three-night stay, Clara was diagnosed with Tuberous Sclerosis.
Tuberous Sclerosis Complex (TSC) is a rare, multi-system disorder that causes benign tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact a person's quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC live independent, healthy lives and enjoy challenging professions. The incidence and severity of the various aspects of TSC can vary widely between individuals.
Clara is a patient at Lurie Children's Hospital of Chicago, and the Tuberous Sclerosis Clinic navigates her medical team and care.
In April 2022, she began experiencing a new type of seizure. This series of events brought us back to Lurie where an EEG confirmed she was having Epileptic Spasms, a more severe type of seizure. To help control her Focal Seizures and Spasms, Clara takes two different medications twice daily.
Clara has several doctors on her care team, which her Neurologists lead. Her pediatric specialists include an Ophthalmologist, a Nephrologist, a Pulmonologist, a Cardiologist, a Dentist, a Podiatrist and a Dermatologist. Some of these doctors we see very regularly. She also goes for routine EEGs and MRI's to closely monitor her health.
Clara has developmental delays and receives therapy daily. She sees a Physical Therapist, Occupational Therapist, Speech Therapist, and Developmental Therapist. She is also in ABA Therapy and works with Behavior Therapists as a part of her daily routine. Clara is working hard in her sessions and uses basic sign language and PECS to help her communicate right now. Her verbal communication is minimal but she is gaining more words as she grows and learns. Overall, Clara is making remarkable progress and meeting many of her own personal goals. She is on her own path, and it is a path destined for greatness. Physically, Clara is very strong but she struggled with Hypotonia, Excessive Pronation and Toe Walking. To correct these issues Clara wore SMO Braces on both feet. She has recently transitioned into Orthotic Inserts to continue giving her the support she needs to strengthen her muscle tone.
As Clara grows, her personality does too. She is smart, spunky and curious. She loves to dance and sing; she has a beat in her bones that is undeniable. The love and bond between Clara and her three older brothers is certain. Above all, she is happy in her world.
Clara amazes us every single day, and we know in our hearts she is going to be okay. One of her nurses in the PICU told her, "You are going to do great things in this world," and we truly believe she will. She is determined, strong, and brave. Her spirit gives us strength. We are working closely with her care team to ensure that Clara is given every opportunity to reach her highest potential.
The unknown is very scary, but we believe everything happens for a reason. So, we have to believe that Clara will not only succeed but that she'll make a difference with this diagnosis.
Thank you so much for your continued love and support of Clara and the TSC community!
The McKeough Family
