Gaffney family canavan awareness
Donation protected
Hello friends we are the Gaffney family. Heidi, Paul III, Paul IV age 8 and HarleeGrace age 6.Paul IV and HarleeGrace both have a rare genetic disease called Canavan Disease.
Canavan Disease is a rare fatal genetic neurological disorder that deteriorates the white matter (myelin) in the brain. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions, signs of which begin in the first 3-6 months of their life when children will begin to exhibit a lack of head control. Other symptoms include: loss of motor skills, difficulty eating, reflux, lack of tracking with the eyes and problems controlling muscle tone. Children afflicted with the disease suffer from a combination of the following:
Blindness
Paralysis
Prone to seizures
Loss of dexterity
Speech impairment
Loss of basic motor skills
Failure to Thrive
and even loss of life
we we are raising money to help get us to our annual conference with doctors researchers and other families that go through the struggles just like us the conference is in April 2016 in Orlando Florida we want to get there!!! All the money donated will help us with gas,travel,hotel,registration and a few activies since we will be at the happiest place on earth Disney
when our family travels we have to drive everywhere we cannot take a plane we have to much equipment and gear to hold on s plane so we take our personal van we have took the long trip in 2012 and that was our first conference we attended in Florida we are praying we get enough funds to make this happen and get our family to the conference it's not cheap traveling with a medical family especially 1200miles away one way!!!
please share our gofundme page
To learn more about Paul IV and HarleeGrace please visit Paul and Harleegrace Journey For a Cure at https://www.facebook.com/pages/Paul-and-Harleegrace-journey-for-a-cure/157622941056166
Canavan Disease is a rare fatal genetic neurological disorder that deteriorates the white matter (myelin) in the brain. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions, signs of which begin in the first 3-6 months of their life when children will begin to exhibit a lack of head control. Other symptoms include: loss of motor skills, difficulty eating, reflux, lack of tracking with the eyes and problems controlling muscle tone. Children afflicted with the disease suffer from a combination of the following:
Blindness
Paralysis
Prone to seizures
Loss of dexterity
Speech impairment
Loss of basic motor skills
Failure to Thrive
and even loss of life
we we are raising money to help get us to our annual conference with doctors researchers and other families that go through the struggles just like us the conference is in April 2016 in Orlando Florida we want to get there!!! All the money donated will help us with gas,travel,hotel,registration and a few activies since we will be at the happiest place on earth Disney
when our family travels we have to drive everywhere we cannot take a plane we have to much equipment and gear to hold on s plane so we take our personal van we have took the long trip in 2012 and that was our first conference we attended in Florida we are praying we get enough funds to make this happen and get our family to the conference it's not cheap traveling with a medical family especially 1200miles away one way!!!
please share our gofundme page
To learn more about Paul IV and HarleeGrace please visit Paul and Harleegrace Journey For a Cure at https://www.facebook.com/pages/Paul-and-Harleegrace-journey-for-a-cure/157622941056166
Organizer
Heidi Gaffney
Organizer
Manchester, NH