Taylor's Epilepsy Surgery
Donation protected
Our sweet little Taylor Jane was diagnosed with Epilepsy in December of 2010. She was six months old and after having already spent a few very rough weeks in the NICU at birth, this news was not easy to accept. We spent many nights in the ER, as Taylor was having 50 to 100 seizures per day. We switched medications several times and were told over the last 3 years that the seizures were generalized and our only treatment option was through medication. As time has passed, her Epilepsy diagnosis has turned into intractable Epilepsy, which means it is not well controlled with medication.
In September 2013 Taylor was diagnosed with Pervasive Developmental Disorder (PDD) which put her on the Autism Spectrum. I felt heartbroken after hearing from her Neuropsychologist that she was 24 months behind developmentally and that over time she would continue to progressively fall further behind her peers.
In December 2013 we went for a visit with Taylor’s Neurologist following a presentation of Taylor's case that he had given at Epilepsy Conference. He explained that one of the radiologists had spotted a cortical dysplasia in the left frontal lobe on her MRI. The doctor proposed scheduling surgery to verify their findings and remove the spot. However, a friend pleaded with us to go out of state and get a second opinion at the Cleveland Clinic. Although it seemed near impossible to pull together, we received many generous donations and were able to raise almost $3,000! We are so grateful for all the support we were given to help get us out there.
A week and a half at the Cleveland Clinic ended with a recommendation for Taylor to have epilepsy surgery. They had done extensive testing on her and the findings were that 80% of her seizure activity is coming from her left frontal lobe. They recommended removing the entire area. We felt confident talking with the surgeon, Vice Chairman of the Epilepsy Institute, and after coming home we made the decision to schedule Taylor’s surgery with him for the end of July of this year.
After having failed 9 anti-epileptic medications, Taylor currently takes 3 medications at high doses and continues to have break through seizures daily. This is not a good quality of life for her. The ultimate goal of this procedure is to remove the section of her brain that is responsible for 80% of her seizure activity. If it is successful we have an excellent chance to reduce the amount of medications she takes to control seizure activity in the left side and stop suppressing the right side so heavily. Unfortunately, there isn't a way to only medicate half of her brain, so clearly the benefit of reducing medications overall is a chance for the right side of her brain to function at a higher level so that she can grow developmentally.
Being presented with such a life-changing opportunity for our sweet daughter feels indescribable. It would be silly to let something as trivial as money become the determining factor in whether or not she gets a chance at something as immeasurable as life. So as hard as it is to put aside the uncomfortable feelings, that’s exactly what we’ve decided to do. Asking for help is the very best option we have. We come to you as parents hoping and praying that you will help give Taylor this chance that she so greatly deserves. With your help we can give Taylor the chance for a better life!
All funds raised will be used for medical expenses associated with Taylor’s procedure, recovery therapies, follow-up medical care and some travel expenses. Round trip airfare for the surgery visit has been provided by Southwest Flights for Kids with Medical Conditions and the Cleveland Clinic.
All our love and gratitude,
Kory, Chantell, Shaylee & Taylor
If you would like to read the full detailed version of this post, please visit our blog at: http://theymakelifesparkle.blogspot.com/
In September 2013 Taylor was diagnosed with Pervasive Developmental Disorder (PDD) which put her on the Autism Spectrum. I felt heartbroken after hearing from her Neuropsychologist that she was 24 months behind developmentally and that over time she would continue to progressively fall further behind her peers.
In December 2013 we went for a visit with Taylor’s Neurologist following a presentation of Taylor's case that he had given at Epilepsy Conference. He explained that one of the radiologists had spotted a cortical dysplasia in the left frontal lobe on her MRI. The doctor proposed scheduling surgery to verify their findings and remove the spot. However, a friend pleaded with us to go out of state and get a second opinion at the Cleveland Clinic. Although it seemed near impossible to pull together, we received many generous donations and were able to raise almost $3,000! We are so grateful for all the support we were given to help get us out there.
A week and a half at the Cleveland Clinic ended with a recommendation for Taylor to have epilepsy surgery. They had done extensive testing on her and the findings were that 80% of her seizure activity is coming from her left frontal lobe. They recommended removing the entire area. We felt confident talking with the surgeon, Vice Chairman of the Epilepsy Institute, and after coming home we made the decision to schedule Taylor’s surgery with him for the end of July of this year.
After having failed 9 anti-epileptic medications, Taylor currently takes 3 medications at high doses and continues to have break through seizures daily. This is not a good quality of life for her. The ultimate goal of this procedure is to remove the section of her brain that is responsible for 80% of her seizure activity. If it is successful we have an excellent chance to reduce the amount of medications she takes to control seizure activity in the left side and stop suppressing the right side so heavily. Unfortunately, there isn't a way to only medicate half of her brain, so clearly the benefit of reducing medications overall is a chance for the right side of her brain to function at a higher level so that she can grow developmentally.
Being presented with such a life-changing opportunity for our sweet daughter feels indescribable. It would be silly to let something as trivial as money become the determining factor in whether or not she gets a chance at something as immeasurable as life. So as hard as it is to put aside the uncomfortable feelings, that’s exactly what we’ve decided to do. Asking for help is the very best option we have. We come to you as parents hoping and praying that you will help give Taylor this chance that she so greatly deserves. With your help we can give Taylor the chance for a better life!
All funds raised will be used for medical expenses associated with Taylor’s procedure, recovery therapies, follow-up medical care and some travel expenses. Round trip airfare for the surgery visit has been provided by Southwest Flights for Kids with Medical Conditions and the Cleveland Clinic.
All our love and gratitude,
Kory, Chantell, Shaylee & Taylor
If you would like to read the full detailed version of this post, please visit our blog at: http://theymakelifesparkle.blogspot.com/
Organizer
Chantell Ferrin
Organizer
West Jordan, UT
