Lissencephaly Awareness— Maverick’s Story
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We have not yet fully introduced our son, Maverick, to the masses. Mav is 4 months old.
Maverick has been a fun-loving, bubbly (and babbly) little one since we brought him into the world on February 4th 2024.
My wife sent me videos of Maverick one day while I was at work, asking me if I thought the movements he was having were ‘normal’.
Our world was turned upside when he was brought in to have an EEG, and the doctor immediately referred Maverick to the emergency department at Stollery Children’s Hospital in Edmonton, AB— Maverick was having Infantile Spasms.
I wish this was where our story ended. Sadly it is not.
After his episodes (which my wife had started to film from the beginning) were witnessed in the hospital, we were admitted and scheduled for an MRI.
Several painful hours later, we had a diagnosis.
After an eye exam with the hospital’s Ophthalmologist, and a discussion of findings, a team of Neurologists came into our room.
Maverick has been diagnosed with a condition called ‘smooth brain’ or ‘Lissencephaly’. It is a rare condition that causes the surface of the brain, the ‘cortex’ (which is normally full of wrinkles that we see on most pictures of the brain), to be almost entirely smooth. These ‘wrinkles’ help to relay messages to the entirety of Maverick’s body to help him do things that we take for granted on a daily basis, such as eating, sitting, crawling/walking, learning and other basic motor functions. Picture a highway of fast moving cars, which loops onto itself without any exits.
This will result in Maverick having severe developmental delays and disabilities and he will undoubtedly suffer from an aggressive form of epilepsy that will be challenging to treat for the remainder of his life. It is incurable.
Maverick may never walk, talk or be able to do many things on his own.
This has been a devastating blow to our family unit, and I’m pleading with our joint families and extended communities for help.
This has already resulted in missed work, will result in unpaid bills, medical expenses and other financial strife as they relate to Maverick’s treatment.
We appreciate your love, support and prayers at this time. Any and all help would be greatly appreciated as we weigh through options for treatment.
We will provide Maverick with the best treatment that we can afford, and as normal of a life as humanly possible. We will do anything for our son and nothing will stop us in our pursuit to keep him alive and as happy of a boy as he has always been.
Maverick deserves to live his life to the absolute fullest, and not by what his condition dictates.
Please send your love, prayers and hope our way. This has been extremely difficult news to hear and we are still waiting to hear more.
Maverick has been a fun-loving, bubbly (and babbly) little one since we brought him into the world on February 4th 2024.
My wife sent me videos of Maverick one day while I was at work, asking me if I thought the movements he was having were ‘normal’.
Our world was turned upside when he was brought in to have an EEG, and the doctor immediately referred Maverick to the emergency department at Stollery Children’s Hospital in Edmonton, AB— Maverick was having Infantile Spasms.
I wish this was where our story ended. Sadly it is not.
After his episodes (which my wife had started to film from the beginning) were witnessed in the hospital, we were admitted and scheduled for an MRI.
Several painful hours later, we had a diagnosis.
After an eye exam with the hospital’s Ophthalmologist, and a discussion of findings, a team of Neurologists came into our room.
Maverick has been diagnosed with a condition called ‘smooth brain’ or ‘Lissencephaly’. It is a rare condition that causes the surface of the brain, the ‘cortex’ (which is normally full of wrinkles that we see on most pictures of the brain), to be almost entirely smooth. These ‘wrinkles’ help to relay messages to the entirety of Maverick’s body to help him do things that we take for granted on a daily basis, such as eating, sitting, crawling/walking, learning and other basic motor functions. Picture a highway of fast moving cars, which loops onto itself without any exits.
This will result in Maverick having severe developmental delays and disabilities and he will undoubtedly suffer from an aggressive form of epilepsy that will be challenging to treat for the remainder of his life. It is incurable.
Maverick may never walk, talk or be able to do many things on his own.
This has been a devastating blow to our family unit, and I’m pleading with our joint families and extended communities for help.
This has already resulted in missed work, will result in unpaid bills, medical expenses and other financial strife as they relate to Maverick’s treatment.
We appreciate your love, support and prayers at this time. Any and all help would be greatly appreciated as we weigh through options for treatment.
We will provide Maverick with the best treatment that we can afford, and as normal of a life as humanly possible. We will do anything for our son and nothing will stop us in our pursuit to keep him alive and as happy of a boy as he has always been.
Maverick deserves to live his life to the absolute fullest, and not by what his condition dictates.
Please send your love, prayers and hope our way. This has been extremely difficult news to hear and we are still waiting to hear more.
Co-organizers (2)
Sheldon James
Organizer
Edmonton, AB
Hayley James
Co-organizer