Wheels That Heal Cruise for a Cause Recipient, 2023
Luke Zechariah Stevens and Family
Luke Zechariah Stevens and Family
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Luke Stevens is a bright 7-year-old boy, living in Cambridge, Maryland. When Luke was
18 months old, Luke 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
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, 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 they were
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 Epilipticus, 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 forced the family to do another EEG where his seizure
medications were temporarily stopped in an attempt to locate where the seizures
originate from. The results of this EEG confirmed that the best plan of action moving
forward is a full right side hemispherectomy, which is now scheduled for September 8,
2023. After the surgery, Luke is expected to have 4-6 weeks worth of in-patient therapy,
rehab, and recovery, with intense outpatient therapies following after being sent home.
Through all of this, Luke is a very happy, positive, and motivated little boy. Doctor
appointments, therapies, and the need to fight is how he identifies life, so he has no fear
in these areas. The family has been facing this with minimal income and resources, as
Luke requires constant assistance and supervision due to the sensitive nature of his
condition and while facing surgery preparation. The family also faces an aggressive
schedule to get Luke the proper support, which includes his homeschool schedule.
Without aggressive treatment and surgery, 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!
18 months old, Luke 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
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, 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 they were
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 Epilipticus, 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 forced the family to do another EEG where his seizure
medications were temporarily stopped in an attempt to locate where the seizures
originate from. The results of this EEG confirmed that the best plan of action moving
forward is a full right side hemispherectomy, which is now scheduled for September 8,
2023. After the surgery, Luke is expected to have 4-6 weeks worth of in-patient therapy,
rehab, and recovery, with intense outpatient therapies following after being sent home.
Through all of this, Luke is a very happy, positive, and motivated little boy. Doctor
appointments, therapies, and the need to fight is how he identifies life, so he has no fear
in these areas. The family has been facing this with minimal income and resources, as
Luke requires constant assistance and supervision due to the sensitive nature of his
condition and while facing surgery preparation. The family also faces an aggressive
schedule to get Luke the proper support, which includes his homeschool schedule.
Without aggressive treatment and surgery, 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!