Wheels That Heal Cruise for a Cause Recipient, 2023
Luke Zechariah Stevens and Family
Luke Zechariah Stevens and Family
|
|
|
Luke Stevens is a bright 7-year-old boy, living in Cambridge, Maryland. When Luke was
just 18 months old, he had a Grand Mal seizure, which sent him to the hospital. There, he was diagnosed with a rare developmental brain disorder called Polymicrogyria, or PMG for short. PMG is defined as having extra material on certain parts of the brain which keep the brain waves from connecting to their destination. This disruption causes physical, emotional, behavioral, cognitive delays, and severe epilepsy. After running multiple tests, it was also concluded that Luke has another rare disorder, a genetic mutation disorder called DUP16p11.2. This duplication is known to be connected to PMG and epilepsy, as well as many other difficulties that involve his heart and internal organs.
After Covid interrupted his routine appointments, Luke once again began having very severe seizures, (approximately 30 seizures an hour). He was then diagnosed with Lennox-Gastaut Syndrome, or LGS for short, which is best described as the patient having multiple different types of seizures, which are uncontrollable by medications. It was at this time, the family began traveling to Children's National Hospital in DC, where the family was informed of Luke’s need for immediate brain surgery.
On June 28, 2022, Luke had a successful surgery, which eliminated one of the four types of seizures he was having, while isolating the other three types to the right side of the brain. After an EEG in February of this year, it was determined that Luke’s brain was showing rhythmic spikes on the right side of the brain that are very aggressive in nature. This is known as Status Epilepticus, or ESES for short. This is the result of the other three types of seizures growing in strength after being isolated. ESES is also known to have a major impact on cognitive abilities and can cause serious regression and brain deterioration. This has forced the family to prepare for a follow-up EEG where his seizure medications will be temporarily stopped in an attempt to locate where the seizures originate from. Once this has been done, there is the possibility of Luke facing another brain surgery to remove the areas of the brain causing the disruptions, which at its worst, could lead to a full right side hemispherectomy.
Through all of this, Luke is a very happy, positive, and motivated little boy. Doctor
appointments, therapy sessions, and the need to fight is how he identifies life, so he has no fear of his doctors, his treatments, or procedures. The family has been facing this with only one income as Luke’s mother has left her job to be able to give him constant supervision, as he needs. The family also faces an aggressive schedule to get Luke the proper support, which includes his homeschool schedule. Now, aggressive treatment for these seizures is required for Luke’s safety and quality of life. Without aggressive treatment, the result would be devastating and potentially catastrophic.
The Stevens family desperately wants to be able to provide Luke with everything he needs to be safe and healthy such as seizure monitoring devices and adaptable equipment. A secondary goal is to become independent once again. Let’s help this family!
just 18 months old, he had a Grand Mal seizure, which sent him to the hospital. There, he was diagnosed with a rare developmental brain disorder called Polymicrogyria, or PMG for short. PMG is defined as having extra material on certain parts of the brain which keep the brain waves from connecting to their destination. This disruption causes physical, emotional, behavioral, cognitive delays, and severe epilepsy. After running multiple tests, it was also concluded that Luke has another rare disorder, a genetic mutation disorder called DUP16p11.2. This duplication is known to be connected to PMG and epilepsy, as well as many other difficulties that involve his heart and internal organs.
After Covid interrupted his routine appointments, Luke once again began having very severe seizures, (approximately 30 seizures an hour). He was then diagnosed with Lennox-Gastaut Syndrome, or LGS for short, which is best described as the patient having multiple different types of seizures, which are uncontrollable by medications. It was at this time, the family began traveling to Children's National Hospital in DC, where the family was informed of Luke’s need for immediate brain surgery.
On June 28, 2022, Luke had a successful surgery, which eliminated one of the four types of seizures he was having, while isolating the other three types to the right side of the brain. After an EEG in February of this year, it was determined that Luke’s brain was showing rhythmic spikes on the right side of the brain that are very aggressive in nature. This is known as Status Epilepticus, or ESES for short. This is the result of the other three types of seizures growing in strength after being isolated. ESES is also known to have a major impact on cognitive abilities and can cause serious regression and brain deterioration. This has forced the family to prepare for a follow-up EEG where his seizure medications will be temporarily stopped in an attempt to locate where the seizures originate from. Once this has been done, there is the possibility of Luke facing another brain surgery to remove the areas of the brain causing the disruptions, which at its worst, could lead to a full right side hemispherectomy.
Through all of this, Luke is a very happy, positive, and motivated little boy. Doctor
appointments, therapy sessions, and the need to fight is how he identifies life, so he has no fear of his doctors, his treatments, or procedures. The family has been facing this with only one income as Luke’s mother has left her job to be able to give him constant supervision, as he needs. The family also faces an aggressive schedule to get Luke the proper support, which includes his homeschool schedule. Now, aggressive treatment for these seizures is required for Luke’s safety and quality of life. Without aggressive treatment, the result would be devastating and potentially catastrophic.
The Stevens family desperately wants to be able to provide Luke with everything he needs to be safe and healthy such as seizure monitoring devices and adaptable equipment. A secondary goal is to become independent once again. Let’s help this family!