New England Grass Roots Institute is announcing a Batten Disease Awareness Fund raiser today at our Community Pot Luck Party for a student in need.
We are a community and together we can help each other.
A Go Fund Me page will be posted for donations for Nora Skye today.
Nora is a beautiful 10 year old girl with Batten Disease. She is fighter and so is her family. Nora has been fighting for her life for 6 years now. Please consider helping this family in the toughest battle you can wage, saving your own baby.
We hope to support Nora and her mom Jessica Abbott Montville, our student, with funds for medical items, nursing and emotional support to the very best of our ability.
Please meet Nora and follow her progress here: https://m.facebook.com/MyNoraSkye
Please learn more about Battens Disease Awareness at:
- What is Batten Disease?
Batten Disease is a common name for a group of ten diasease known as Neuronal Ceroid Lipofuscinosis (NCL). It is the most common neurodegenerative disease in children.
- Batten disease is rarely diagnosed immediately and is often mistaken for:
- Children with Batten Disease develop normally until the age of onset. Both the parents and the child struggle with the reality of the child losing skills already developed.Onset may be characterized by:
Progressive vision loss leading to blindness
Clumsiness leading to loss of mobility
Personaltity and behavior changes
loss of speech.Batten disease causes continuing physical and mental deteriation leading to early death.
A message from Nora’s mom, Jessica Abbott Montville:
“Nora needs medical equipment and needs maybe an outside swing . That Nora is a fighter and she’s been fighting this battle for 6 years and is still interactive in school and therapies and stuff. And it’s also very hard on the family emotionally but Nora still loves to do fun things and meet new people . And maybe a little about the disease. I’m not good at those type of things.”
New England Grass Roots Institute is very proud to support our community in all ways possible.
Mike Fitzgerald kicks off our fund raiser with a heart felt call to action from the cannabis community. Please watch & share to support Nora. Thank you!