Living with Neurofibromatosis
Donation protected
What is Ethan's Story?
My brother Ethan was born with Neurofibromatosis in 2003 and my world changed overnight. The first few weeks of Ethan’s life seemed messy and confusing as he was sent to different hospitals in search of a diagnosis. Ethan was diagnosed with Neurofibromatosis (NF) Type 1 which is a defect of chromosome 17 and results in tumors that grow on nerves. At that time I was nine years old and felt it was not fair for Ethan to be born with NF, because it caused him to lose his right eye and have a misshapen face.
As a big sister, I wanted to help my little brother. But there was nothing I could do and I felt helpless. Frustration and depression made me feel like an old person trapped in a child’s body. During that time Dad cried and Mom forgot how to laugh. My entire family was overwhelmed by the challenges and uncertainties Neurofibromatosis brought into our lives.
During Ethan’s first year of life, his cheerful attitude helped me realize that pity and withdrawal was not an option. Responding to peoples’ stares and questions is a daily challenge, but it is also an opportunity. Ethan is unique and his circumstances can be used to encourage others. Five years ago I started a YouTube channel for Ethan to share his violin music and last year we made a Facebook page that highlights our family’s response to Living with Neurofibromatosis.
As Ethan has grown older, he is better able to communicate. We would like to expand our outreach so that he has more opportunities to share his story. Please help us meet a goal of $2000 by the month of May which is Neurofibormatosis Awareness month.
Why contribute?
Your donation will support…
AWARENESS: funds will be used to update and print Ethan’s personalized NF tracts that we distribute daily when we tell people about Ethan’s Facebook page
https://www.facebook.com/ethan.damato.neurofibromatosis?ref=hl
PERFORMANCE: we are traveling to Boston in June for medical appointments at Boston Children’s Hospital and NF outreach performances
https://www.youtube.com/channel/UCllqdZszd1HCYVNqnXAXK7g
SERVICE: help us in encourage other families living with NF by providing the funding to lead a music class at NF Family Camp, Texas NF Foundation, this coming fall
While most of NF fundraising is focused on research for a cure, our family requests your support of Living with Neurofibromatosis which will help Ethan and enable us to serve other families living with NF.
Thanks for your support!
#LifewithNF #EthanslifewithNF
#NeurofibromatosisAwareness
~Naomi, Joshua, David and Ethan D'Amato performing a Neurofibromatosis outreach concert~
My brother Ethan was born with Neurofibromatosis in 2003 and my world changed overnight. The first few weeks of Ethan’s life seemed messy and confusing as he was sent to different hospitals in search of a diagnosis. Ethan was diagnosed with Neurofibromatosis (NF) Type 1 which is a defect of chromosome 17 and results in tumors that grow on nerves. At that time I was nine years old and felt it was not fair for Ethan to be born with NF, because it caused him to lose his right eye and have a misshapen face.
As a big sister, I wanted to help my little brother. But there was nothing I could do and I felt helpless. Frustration and depression made me feel like an old person trapped in a child’s body. During that time Dad cried and Mom forgot how to laugh. My entire family was overwhelmed by the challenges and uncertainties Neurofibromatosis brought into our lives.
During Ethan’s first year of life, his cheerful attitude helped me realize that pity and withdrawal was not an option. Responding to peoples’ stares and questions is a daily challenge, but it is also an opportunity. Ethan is unique and his circumstances can be used to encourage others. Five years ago I started a YouTube channel for Ethan to share his violin music and last year we made a Facebook page that highlights our family’s response to Living with Neurofibromatosis.
As Ethan has grown older, he is better able to communicate. We would like to expand our outreach so that he has more opportunities to share his story. Please help us meet a goal of $2000 by the month of May which is Neurofibormatosis Awareness month.
Why contribute?
Your donation will support…
AWARENESS: funds will be used to update and print Ethan’s personalized NF tracts that we distribute daily when we tell people about Ethan’s Facebook page
https://www.facebook.com/ethan.damato.neurofibromatosis?ref=hl
PERFORMANCE: we are traveling to Boston in June for medical appointments at Boston Children’s Hospital and NF outreach performances
https://www.youtube.com/channel/UCllqdZszd1HCYVNqnXAXK7g
SERVICE: help us in encourage other families living with NF by providing the funding to lead a music class at NF Family Camp, Texas NF Foundation, this coming fall
While most of NF fundraising is focused on research for a cure, our family requests your support of Living with Neurofibromatosis which will help Ethan and enable us to serve other families living with NF.
Thanks for your support!
#LifewithNF #EthanslifewithNF
#NeurofibromatosisAwareness
~Naomi, Joshua, David and Ethan D'Amato performing a Neurofibromatosis outreach concert~
Organizer
Naomi D'Amato
Organizer
Duncanville, TX
