The Fight for Lukas
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Hi, this is my nephew Lukas.
Lukas is an adorable 12 year old boy who loves Legos, comic books, his pets, and the outdoors; & would love nothing more than to live a life without pain and suffering. Two days ago, he was diagnosed with Rasmussen's Encephalitis.
His parents were faced with the toughest decision of their lives and only given two days to make it.
Today, Lukas had a partial hemispherectomy with the understanding that a second brain surgery may be necessary within the year. Both of these surgeries will be followed by years of therapy.
Due to looming medical bills that will continue to pile up over the next couple of years, I’ve started a gofundme page for Lukas and his family.
This will not only help Lukas’ family to survive through these hard times, but will hopefully make a dent in his future medical bills.
This is a post made by his mother the day of his surgery:
“Two days ago we received some very disheartening news. We were told that Lukas' seizures were originating from the temporal and frontal lobes and extending to but possibly also originating in the parietal lobe as well. Dr. Lee believes Lukas has Rasmussen's Encephalitis (RE) The recommendation to treat RE is total hemispherectomy in Lukas' case the left side.
This would leave him with permanent right side weakness, permanent loss of fine motor skills in the right hand, partial but permanent vision loss in both eyes and loss of speech for months. We were told with intense therapy he "most likely" would get his speech back and also his ability to walk. We were told this was the best recommendation.
The lesser recommendation was a partial hemispherectomy which might work, probably not based on data, but would leave him with no deficits. We were told a second and complete surgery could be performed at a later date if his seizures continue and/or the pathology report confirms RE.
We were given 2 days to decide. I went to bed thinking we were going for the hemispherectomy and I hated the decision mainly because Lukas was not prepared for this outcome . He knew he was here for surgery but had no idea he would wake up partially paralyzed, partially blinded, and mute.
I sat in the room looking at all the Lego sets sent by friends thinking how will he ever be able to play with Legos again? I know a minor inconvenience compared to learning to talk and walk again but still a glaring reality of loss.
This morning after talking to the surgeon and neurologist we opted for a partial hemispherectomy with the understanding that a second surgery may be necessary within the year. I prayed for the right decision for Lukas and I'm at peace with it. I know this boy and I know it would have been awful for him waking up in that condition without prior knowledge and preparation.
For now, we hope for the best but will prepare for the worst. He is in surgery now. They said he will probably be out by 5pm. Please keep this beautiful boy in your prayers.” - Lukas’ mother, Michelle.
For further help understanding the terms used & the struggles of Epilepsy:
Rasmussen's Encephalitis (RE) is a rare inflammatory neurological disease, characterized by frequent & severe seizures, loss of motor skills, speech, paralysis on one side of the body, and dementia.
Hemispherectomy is a surgical procedure which involves total, or partial removal of an affected cerebral hemisphere or disconnecting the affected cerebral hemisphere from the unaffected side.
Lukas is an adorable 12 year old boy who loves Legos, comic books, his pets, and the outdoors; & would love nothing more than to live a life without pain and suffering. Two days ago, he was diagnosed with Rasmussen's Encephalitis.
His parents were faced with the toughest decision of their lives and only given two days to make it.
Today, Lukas had a partial hemispherectomy with the understanding that a second brain surgery may be necessary within the year. Both of these surgeries will be followed by years of therapy.
Due to looming medical bills that will continue to pile up over the next couple of years, I’ve started a gofundme page for Lukas and his family.
This will not only help Lukas’ family to survive through these hard times, but will hopefully make a dent in his future medical bills.
This is a post made by his mother the day of his surgery:
“Two days ago we received some very disheartening news. We were told that Lukas' seizures were originating from the temporal and frontal lobes and extending to but possibly also originating in the parietal lobe as well. Dr. Lee believes Lukas has Rasmussen's Encephalitis (RE) The recommendation to treat RE is total hemispherectomy in Lukas' case the left side.
This would leave him with permanent right side weakness, permanent loss of fine motor skills in the right hand, partial but permanent vision loss in both eyes and loss of speech for months. We were told with intense therapy he "most likely" would get his speech back and also his ability to walk. We were told this was the best recommendation.
The lesser recommendation was a partial hemispherectomy which might work, probably not based on data, but would leave him with no deficits. We were told a second and complete surgery could be performed at a later date if his seizures continue and/or the pathology report confirms RE.
We were given 2 days to decide. I went to bed thinking we were going for the hemispherectomy and I hated the decision mainly because Lukas was not prepared for this outcome . He knew he was here for surgery but had no idea he would wake up partially paralyzed, partially blinded, and mute.
I sat in the room looking at all the Lego sets sent by friends thinking how will he ever be able to play with Legos again? I know a minor inconvenience compared to learning to talk and walk again but still a glaring reality of loss.
This morning after talking to the surgeon and neurologist we opted for a partial hemispherectomy with the understanding that a second surgery may be necessary within the year. I prayed for the right decision for Lukas and I'm at peace with it. I know this boy and I know it would have been awful for him waking up in that condition without prior knowledge and preparation.
For now, we hope for the best but will prepare for the worst. He is in surgery now. They said he will probably be out by 5pm. Please keep this beautiful boy in your prayers.” - Lukas’ mother, Michelle.
For further help understanding the terms used & the struggles of Epilepsy:
Rasmussen's Encephalitis (RE) is a rare inflammatory neurological disease, characterized by frequent & severe seizures, loss of motor skills, speech, paralysis on one side of the body, and dementia.
Hemispherectomy is a surgical procedure which involves total, or partial removal of an affected cerebral hemisphere or disconnecting the affected cerebral hemisphere from the unaffected side.
Organizer and beneficiary
C.A. Brandt
Organizer
Bristol, VA
Michelle Mottern
Beneficiary