Bailey and DIPG Research Support
Donation protected
Hi my name is Bailey Devenbaugh and on the 7th of September, 2015 at the ag of 18 I got diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). Some facts about DIPG is it's a brain tumor that arises in the pons, a region of the brainstem involved in critical body functions.
Everything listed in this picture I have had a symptom except for heart rate. DIPG is a very rare and aggressive brain tumor, it is inoperable, there is no cure for it, the survival rate for children is 10% within 2 years. The rarity of DIPG biopsies has contributed to the scarcity of tumor tissue available for experimental study. DIPG is the second most common cancerous brain tumor of childhood, with an estimated 200-400 children affected each year in the United States. DIPG is found mainly in children so for someone my age to get diagnosed with it is even more rare.
For treatment there is Radation. Radation can only be done once, if the x-ray is not aimed properly at the tumor, healthy brain cells will be killed. You do get relieve from your symptoms but only for a few months. I had radation done 3 months ago and some of my symptoms have worsened such as my vision. I went from having it bad, to not having it which was during radation, back to having it but not as bad. Chemo is not a option because the tumor is protected by the blood-brain barrier.
For me living with DIPG has been tough due to everything I lost. Working honestly was probably the toughest thing to lose. I worked full time at ABC Warehouse for over a year, it was the first and only job I have had. I grew close to the employees and the enviroment was always hardworking yet very relaxed. I enjoyed work and was there 40+ hours a week. I was even working my days off I enjoyed work that much. But then it all got taken away.
Driving was another huge one for me. I use to drive a lot between work and school I was putting a lot of low miles on my car. Also as some of you might know I was into car audio, my biggest hobby. I sold it, I educated people on it, I installed it, I lived it. I can still somewhat enjoy car audio, but due to the tumor sound sometimes will be very quiet, or one ear will be louder than the other. I can't install because I can't lift heavy objects, can't kneel, can't lay flat, I have a hard time with my hands I am born right arm dominant but sometimes my left hands wants to be dominant then I get myself tangled up for lack of a better word.
I am not asking, but making a way for you to be able to make the last of my time as enjoyable as possible. Not medicine, or medical bills, or car loans but for the movies with friends, shopping with friends, making my last moments as great as possible.
Not only are you donating to me but also DIPG research so we can find a cure for this awful, nasty brain tumor. DIPG is not spoken of very often so we need all the support we can get!
Infiniti is doing a coaches' charity challenge and if you go to this Link it will take you to the website all you have to do click VOTE on Michigan's coach, John Beilein and then either sign up or Log in via ESPN account. He is donating the money to The ChadTough Foundation which funds research and raise awareness. Make sure to spread that link and vote daily!
Everything listed in this picture I have had a symptom except for heart rate. DIPG is a very rare and aggressive brain tumor, it is inoperable, there is no cure for it, the survival rate for children is 10% within 2 years. The rarity of DIPG biopsies has contributed to the scarcity of tumor tissue available for experimental study. DIPG is the second most common cancerous brain tumor of childhood, with an estimated 200-400 children affected each year in the United States. DIPG is found mainly in children so for someone my age to get diagnosed with it is even more rare.
For treatment there is Radation. Radation can only be done once, if the x-ray is not aimed properly at the tumor, healthy brain cells will be killed. You do get relieve from your symptoms but only for a few months. I had radation done 3 months ago and some of my symptoms have worsened such as my vision. I went from having it bad, to not having it which was during radation, back to having it but not as bad. Chemo is not a option because the tumor is protected by the blood-brain barrier.
For me living with DIPG has been tough due to everything I lost. Working honestly was probably the toughest thing to lose. I worked full time at ABC Warehouse for over a year, it was the first and only job I have had. I grew close to the employees and the enviroment was always hardworking yet very relaxed. I enjoyed work and was there 40+ hours a week. I was even working my days off I enjoyed work that much. But then it all got taken away.
Driving was another huge one for me. I use to drive a lot between work and school I was putting a lot of low miles on my car. Also as some of you might know I was into car audio, my biggest hobby. I sold it, I educated people on it, I installed it, I lived it. I can still somewhat enjoy car audio, but due to the tumor sound sometimes will be very quiet, or one ear will be louder than the other. I can't install because I can't lift heavy objects, can't kneel, can't lay flat, I have a hard time with my hands I am born right arm dominant but sometimes my left hands wants to be dominant then I get myself tangled up for lack of a better word.
I am not asking, but making a way for you to be able to make the last of my time as enjoyable as possible. Not medicine, or medical bills, or car loans but for the movies with friends, shopping with friends, making my last moments as great as possible.
Not only are you donating to me but also DIPG research so we can find a cure for this awful, nasty brain tumor. DIPG is not spoken of very often so we need all the support we can get!
Infiniti is doing a coaches' charity challenge and if you go to this Link it will take you to the website all you have to do click VOTE on Michigan's coach, John Beilein and then either sign up or Log in via ESPN account. He is donating the money to The ChadTough Foundation which funds research and raise awareness. Make sure to spread that link and vote daily!
Organizer
Bailey Devenbaugh
Organizer
Grand Ledge, MI