Take Action for Adam
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Hi everyone!
I am Adam Domingue from Lafayette, Louisiana. I was diagnosed at the age of 15 with Friedreich's Ataxia. I am now 24 and have been battling this disorder for almost a decade.
My little sister, Alexandra Michelle, was also diagnosed around the same time as me but she gained her angel wings at the young age of 18 about 2 years ago from complications with this disorder. Alex is one of the reasons I push myself so hard to make everything I can out of this life! I owe it to her to her to stay positive and fight this disorder with every ounce of my being. Alex was a fighter and her strength gives me hope each day!
Let me share a little about this disorder. Friedreich's ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems. Typically developing in childhood, it can lead to impaired muscle coordination (ataxia) and worsens over time.
In Friedreich’s ataxia the spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This degenrative disorder results in awkward, unsteady movements and impaired sensory functions. It also causes problems in the heart and spine but does not affect thinking and reasoning abilities (cognitive functions).
Friedreich’s ataxia is caused by a defect (mutation) in a gene labeled FXN. The disorder is recessive, meaning it occurs only in someone who inherits two defective copies of the gene, one from each parent. Although rare, Friedreich’s ataxia is the most common form of hereditary ataxia, affecting about 1 in every 50,000 people in the United States.(disorder.http://www.ninds.nih.gov/index.htm)
My dream is to be able to be more free to move around and do things that can help me feel productive. I want to be able to collect chicken eggs and help keep up my family property. I want to be able to play and exercise my dog Torah. She is an Italian Mastiff and honestly, my best friend! I've always loved the outdoors, to be able to go fishing or just sit peacfully enjoying an afternoon in the yard would change my life!
We don't always realize the things we take for granted until we lose the ablility to do them, even the simplest of tasks. My family has always encouraged me to not dwell on the negative aspects and what I cannot do but to focus on those things that i can do!
That is why I've done research on the Action Track Chair and so badly want to have one of my own! But, these chairs are quite pricey and that's why I am asking for your help! Feel free to check out the chairs yourself at the link below. Having one of these chairs of my own would open up countless opportunites for me and would have such a positive effect on my life!
http://www.actiontrackchair.com
Will you help me make this possible, will you help me fufill my dream of living a prodcutive life? Thank you in advance for your generosity and support!
Every bit counts!!!!
I am Adam Domingue from Lafayette, Louisiana. I was diagnosed at the age of 15 with Friedreich's Ataxia. I am now 24 and have been battling this disorder for almost a decade.
My little sister, Alexandra Michelle, was also diagnosed around the same time as me but she gained her angel wings at the young age of 18 about 2 years ago from complications with this disorder. Alex is one of the reasons I push myself so hard to make everything I can out of this life! I owe it to her to her to stay positive and fight this disorder with every ounce of my being. Alex was a fighter and her strength gives me hope each day!
Let me share a little about this disorder. Friedreich's ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems. Typically developing in childhood, it can lead to impaired muscle coordination (ataxia) and worsens over time.
In Friedreich’s ataxia the spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This degenrative disorder results in awkward, unsteady movements and impaired sensory functions. It also causes problems in the heart and spine but does not affect thinking and reasoning abilities (cognitive functions).
Friedreich’s ataxia is caused by a defect (mutation) in a gene labeled FXN. The disorder is recessive, meaning it occurs only in someone who inherits two defective copies of the gene, one from each parent. Although rare, Friedreich’s ataxia is the most common form of hereditary ataxia, affecting about 1 in every 50,000 people in the United States.(disorder.http://www.ninds.nih.gov/index.htm)
My dream is to be able to be more free to move around and do things that can help me feel productive. I want to be able to collect chicken eggs and help keep up my family property. I want to be able to play and exercise my dog Torah. She is an Italian Mastiff and honestly, my best friend! I've always loved the outdoors, to be able to go fishing or just sit peacfully enjoying an afternoon in the yard would change my life!
We don't always realize the things we take for granted until we lose the ablility to do them, even the simplest of tasks. My family has always encouraged me to not dwell on the negative aspects and what I cannot do but to focus on those things that i can do!
That is why I've done research on the Action Track Chair and so badly want to have one of my own! But, these chairs are quite pricey and that's why I am asking for your help! Feel free to check out the chairs yourself at the link below. Having one of these chairs of my own would open up countless opportunites for me and would have such a positive effect on my life!
http://www.actiontrackchair.comWill you help me make this possible, will you help me fufill my dream of living a prodcutive life? Thank you in advance for your generosity and support!
Every bit counts!!!!
Organizer and beneficiary
Lauren Mahfouz
Organizer
Lafayette, LA
Raegan Domingue
Beneficiary