Super Cooper
Donation protected
December 28, 2017 started like a normal snowy day. Cooper was his happy, giggling, smiley self until late afternoon when he started to get a little cranky.
That progressed to Mommy being unable to settle him down. Suddenly his left hand started to twitch slightly. Within seconds the hand twitching progressed to both his left arm and leg twitching. Then his face and eyes went blank, and he wouldn’t respond to his mother’s voice, or any stimulation.
His mom called 911, and the longest wait of her life began. It took 20 minutes for the ambulance to arrive, over an hour to get to the emergency room, and even longer for the seizures to stop.
Since that day Cooper has spent 68 days in the hospital, 45 of them in the Pediatric ICU. During that time, he spent 21 of those days with an EEG video monitor on his head, has endured countless needle pokes for lab work, IVs, 2 lumbar punctures, and 3 central lines, and was put through 2 CT scans and 6 MRIs.
After the countless tests, seizures, and hospital stays Cooper was diagnosed on May 31, 2018 with Early Infantile Epileptic Encephalopathy Type 42. It is caused by an extremely rare genetic mutation.
With this diagnosis there are many unknowns. We do know it is a progressive disease. There is no cure. There is only treatment to try to help control the seizures.
So far Cooper has lost more than 25% of his brain mass. He has lost his swallow reflex and as a result has a G-tube that he takes all his meds and food through. He has lost most of his mobility and strength and is in occupational therapy and physical therapy to try and maintain as much movement and muscle control as possible. To help control the seizures, he is on a ketogenic diet and 5 anti-seizure medications. These medications are hard on his kidneys, they are beginning to ware out and form stones.
In February 2019 we started to notice Cooper having short twitchy episodes which were confirmed to be seizures. From then on, we worked with his neurologist to adjust his medications, in hopes of keeping him out of the hospital. Unfortunately, the episodes increased and got longer until we had to take him into the hospital. He spent 2 more weeks in the hospital, the majority of which was in the PICU. Toward the end of this hospital stay we had to have a very difficult conversation with Cooper’s neurologist about his future. The neurologist told us that our Super Cooper may only have a few months left with us. We also made the decision to add palliative and hospice care to Cooper’s team.
Through all this our biggest reward is whenever we get a glimpse of Cooper’s little smile. He is and always will be our Super Cooper.
The Resech family, Alex & Katelyn, Aiden, Kaylee, Cooper and Hudson
Donations will go to benefit the family’s lost wages and costs of medical care. Due to the 24/7 care Cooper requires, multiple hospitalizations, and the arrival of baby Hudson on May 31st, both Mom and Dad have been staying home from work to take care of the family.
That progressed to Mommy being unable to settle him down. Suddenly his left hand started to twitch slightly. Within seconds the hand twitching progressed to both his left arm and leg twitching. Then his face and eyes went blank, and he wouldn’t respond to his mother’s voice, or any stimulation.
His mom called 911, and the longest wait of her life began. It took 20 minutes for the ambulance to arrive, over an hour to get to the emergency room, and even longer for the seizures to stop.
Since that day Cooper has spent 68 days in the hospital, 45 of them in the Pediatric ICU. During that time, he spent 21 of those days with an EEG video monitor on his head, has endured countless needle pokes for lab work, IVs, 2 lumbar punctures, and 3 central lines, and was put through 2 CT scans and 6 MRIs.
After the countless tests, seizures, and hospital stays Cooper was diagnosed on May 31, 2018 with Early Infantile Epileptic Encephalopathy Type 42. It is caused by an extremely rare genetic mutation.
With this diagnosis there are many unknowns. We do know it is a progressive disease. There is no cure. There is only treatment to try to help control the seizures.
So far Cooper has lost more than 25% of his brain mass. He has lost his swallow reflex and as a result has a G-tube that he takes all his meds and food through. He has lost most of his mobility and strength and is in occupational therapy and physical therapy to try and maintain as much movement and muscle control as possible. To help control the seizures, he is on a ketogenic diet and 5 anti-seizure medications. These medications are hard on his kidneys, they are beginning to ware out and form stones.
In February 2019 we started to notice Cooper having short twitchy episodes which were confirmed to be seizures. From then on, we worked with his neurologist to adjust his medications, in hopes of keeping him out of the hospital. Unfortunately, the episodes increased and got longer until we had to take him into the hospital. He spent 2 more weeks in the hospital, the majority of which was in the PICU. Toward the end of this hospital stay we had to have a very difficult conversation with Cooper’s neurologist about his future. The neurologist told us that our Super Cooper may only have a few months left with us. We also made the decision to add palliative and hospice care to Cooper’s team.
Through all this our biggest reward is whenever we get a glimpse of Cooper’s little smile. He is and always will be our Super Cooper.
The Resech family, Alex & Katelyn, Aiden, Kaylee, Cooper and Hudson
Donations will go to benefit the family’s lost wages and costs of medical care. Due to the 24/7 care Cooper requires, multiple hospitalizations, and the arrival of baby Hudson on May 31st, both Mom and Dad have been staying home from work to take care of the family.
Co-organizers (2)
Deborah Hayes
Organizer
Stratford, WI
Alex Resech
Beneficiary
Cindy Dieringer
Co-organizer