Help August Get to CHOP!
Donation protected
In January of 2013, when August was just shy of two years old, he was diagnosed with a rare and fatal neurological disease called Alexander Disease (AxD). AxD belongs to a class of diseases known as the pediatric leukodystrophies (leuko = white; dystrophy = deterioration), which are marked by the destruction of white matter in the brain. AxD is degenerative and has no disease-specific treatments or cure. Medical care focuses only on treatment of symptoms and maintaining quality of life.
While we do have a great team of doctors here in the Pacific Northwest, there are significant gaps in treatment knowledge since none of them had ever heard of Alexander Disease before August's diagnosis, let alone ever seen another patient with it.
Amazingly, a new Leukodystrophy Center opened at the Children's Hospital of Philadelphia last year, and even more amazingly, they are conducting a clinical study of AxD right now. August is currently scheduled for a 3-day visit at CHOP (August 10-12) both to participate in the study and to have a full clinic day with their team, including visits with neurology, complex care, physical therapy, physical rehab, nutrition, and (we hope) gastroenterology. This visit to CHOP will help advance knowledge and development of treatments for AxD, and will help us to resolve some of the more intractable symptoms that August deals with (such as muscle spasms in his legs that make him fall down).
The research portion will be free to us, and my dear friend Laina Amerson has just donated two plane tickets to get August and me to Philadelphia and back. Our other major expenses will be lodging for three nights (August 9, 10, 11), food, transportation while in Philadelphia, and the bills for the clinic visits.
I estimate that lodging, food, and in-city transportation will cost about $700. The clinic visits will be completely out-of-pocket for us unless our insurance situation changes (I will update if it improves), and could cost as much as $2000. For reference, CHOP just billed a friend's AxD child over $600 for one physical therapy evaluation.
We have already been overwhelmed by the kindness and moral support we have received from our friends and colleagues, and we are grateful for any funds you can contribute to help August participate in this research study and receive medical care from CHOP's leukodystrophy and Alexander Disease specialists. This trip will likely improve August's quality of life and his longevity, and the care he receives will be invaluable in guiding his local medical team as well.
If we raise more money than we need, leftover funds will go into August's own bank account that we use to save money for medical equipment and unexpected medical expenses, and may even go toward sending August back to CHOP for upcoming clinical trials of medications to slow the progression of Alexander Disease.
Thank you for your donation, big or small. Your help in caring for our dear, sweet August means the world to us.
While we do have a great team of doctors here in the Pacific Northwest, there are significant gaps in treatment knowledge since none of them had ever heard of Alexander Disease before August's diagnosis, let alone ever seen another patient with it.
Amazingly, a new Leukodystrophy Center opened at the Children's Hospital of Philadelphia last year, and even more amazingly, they are conducting a clinical study of AxD right now. August is currently scheduled for a 3-day visit at CHOP (August 10-12) both to participate in the study and to have a full clinic day with their team, including visits with neurology, complex care, physical therapy, physical rehab, nutrition, and (we hope) gastroenterology. This visit to CHOP will help advance knowledge and development of treatments for AxD, and will help us to resolve some of the more intractable symptoms that August deals with (such as muscle spasms in his legs that make him fall down).
The research portion will be free to us, and my dear friend Laina Amerson has just donated two plane tickets to get August and me to Philadelphia and back. Our other major expenses will be lodging for three nights (August 9, 10, 11), food, transportation while in Philadelphia, and the bills for the clinic visits.
I estimate that lodging, food, and in-city transportation will cost about $700. The clinic visits will be completely out-of-pocket for us unless our insurance situation changes (I will update if it improves), and could cost as much as $2000. For reference, CHOP just billed a friend's AxD child over $600 for one physical therapy evaluation.
We have already been overwhelmed by the kindness and moral support we have received from our friends and colleagues, and we are grateful for any funds you can contribute to help August participate in this research study and receive medical care from CHOP's leukodystrophy and Alexander Disease specialists. This trip will likely improve August's quality of life and his longevity, and the care he receives will be invaluable in guiding his local medical team as well.
If we raise more money than we need, leftover funds will go into August's own bank account that we use to save money for medical equipment and unexpected medical expenses, and may even go toward sending August back to CHOP for upcoming clinical trials of medications to slow the progression of Alexander Disease.
Thank you for your donation, big or small. Your help in caring for our dear, sweet August means the world to us.
Organizer
Jennifer Driscoll
Organizer
Tacoma, WA