Austin L.H Fund
Donation protected
This is Austin Harper's Story,
Growing up with 3 brothers, Austin was like every other boy, rotten and rowdy. They would all play army as little guys, then they evolved to paint ball guns and archery competitions as they grew up. They all loved fishing, camping, and family time. The family did everything together from household duties to family game night. Austin never had any health issues growing up until the age of 14, that is when his life was changed.
It all started with what the doctor’s thought were just freckles. One spot here than became to a complete cover all from head to now toe. In 2016 he was diagnosed with a rare form of Aggressive Systemic Mastocytosis. As time passed, despite multiple doctors’ visits, Austin was only getting worse. No one had answers for him or his family. He was having allergic reactions to everything, getting deathly ill when others around him where sick with like the flu or cold, having loss of memory, severe bone and joint pain, and sleeping for days. This disease that started in his bone marrow like leukemia, and then spread to rest of his body, but unlike Leukemia it is not a cancer and has no cure at all but it acts like cancer in some ways.
Austin was in the marching band and loved playing the drums when this all started. He had dreams of being an author one day and always volunteered with his school to help young kids with homework or reading. He loves to read and write stories, but because of this illness he had to be taken out of high school his 11th grade year 2017 to stay home, causing him to fail his senior year because the environment around him with large groups made him sicker. His whole life came to a stop. He has never had a driver license, he missed prom, and wasn’t allowed to hang out with friends unless it’s one or two at a time.
He was in Ohio when this all started, after testing his family found out the climate in Ohio was a trigger and they had to move south. They came to Florida in 2017 in hope for a better life for Austin. Even though the sunshine helps him, getting good doctors and good insurance has been difficult. With him now being 18 years old the family has been unable to get him the proper insurance. He needs more bone marrow testing, blood work, medications and they must be able to pay out of pocket for these expenses.
Austin has sacrificed so much and missed out the best years of being a teenager. Now living in Florida, he is working on getting his diploma. The high school he attends has been working with his family to help make sure Austin gets his grades but still has a chance of enjoying one last chance at high school and being somewhat normal. Even though he is missing a lot of school they are working with him.
Currently to this day Austin goes through severe migraines that start very sharp stabbing pain and progress to a full migraine, severe fatigue, flushing to the point of looking like sun poisoning, brain fog, memory loss, bone and joint pain, weakness, abdominal pain, diarrhea, severe constipation, anaphylaxis episodes that require an ER visit, slurred speech, night sweats, blurred vision, lightheadedness , passing out episodes, and tooth pain. The tooth pain is normal, the issue is his wisdom teeth are coming in straight forward. This means that the stress from his wisdom teeth will cause the illness to attach itself to the jaw and can cause brittle bones. The doctors are looking into a best route scenario for this. Because Austin cannot just go get them removed because it could be fatal.
The thing to understand with Austin is that anything can set him off in to an anaphylaxis episode at any given time. Anything means smells, medication, foods, insects, dust, temperatures in his surroundings, fabrics, germs, chemicals, animals, even people just to name a few. Strange thing is that he may have a reaction to one thing then next time not have a reaction to that same thing. This changes at any given moment and is another reason for him and his family to be on high alert also means he can never be left alone.
Then he has had some bone scans done just recently. The results are lesions throughout his skeleton and skull. Also, additional lesions inside his skull. His doctors are fighting to get him medications to help alleviate his symptoms but these medications are not approved here in the US for this disease. So, the family will have to pay around $1800 a month to get this one medication for him. Then to add to his treatment he will eventually be starting chemo therapy to help reduce the lesions in the very near future.
Austin will be 19 years old February 24, 2019 hoping he can graduate high school before the treatments start, but with time his illness just keeps progressing and all his family can do is make sure he is surrounded with love and happiness.
ASM (Aggressive Systemic Mastocytosis) will only get worse with time, the doctors only can help his symptoms and slow some of it down. They cannot make it go away. Eventually spreading to his organs and slowing them down.
With all that said Austin’s spirit is on a different page, he just keeps going like nothing is wrong with him. He doesn’t like people to worry about him and he said, “I will be like my great grandmother, I will get through this like she did her cancer that she had multiple times”.
Growing up with 3 brothers, Austin was like every other boy, rotten and rowdy. They would all play army as little guys, then they evolved to paint ball guns and archery competitions as they grew up. They all loved fishing, camping, and family time. The family did everything together from household duties to family game night. Austin never had any health issues growing up until the age of 14, that is when his life was changed.
It all started with what the doctor’s thought were just freckles. One spot here than became to a complete cover all from head to now toe. In 2016 he was diagnosed with a rare form of Aggressive Systemic Mastocytosis. As time passed, despite multiple doctors’ visits, Austin was only getting worse. No one had answers for him or his family. He was having allergic reactions to everything, getting deathly ill when others around him where sick with like the flu or cold, having loss of memory, severe bone and joint pain, and sleeping for days. This disease that started in his bone marrow like leukemia, and then spread to rest of his body, but unlike Leukemia it is not a cancer and has no cure at all but it acts like cancer in some ways.
Austin was in the marching band and loved playing the drums when this all started. He had dreams of being an author one day and always volunteered with his school to help young kids with homework or reading. He loves to read and write stories, but because of this illness he had to be taken out of high school his 11th grade year 2017 to stay home, causing him to fail his senior year because the environment around him with large groups made him sicker. His whole life came to a stop. He has never had a driver license, he missed prom, and wasn’t allowed to hang out with friends unless it’s one or two at a time.
He was in Ohio when this all started, after testing his family found out the climate in Ohio was a trigger and they had to move south. They came to Florida in 2017 in hope for a better life for Austin. Even though the sunshine helps him, getting good doctors and good insurance has been difficult. With him now being 18 years old the family has been unable to get him the proper insurance. He needs more bone marrow testing, blood work, medications and they must be able to pay out of pocket for these expenses.
Austin has sacrificed so much and missed out the best years of being a teenager. Now living in Florida, he is working on getting his diploma. The high school he attends has been working with his family to help make sure Austin gets his grades but still has a chance of enjoying one last chance at high school and being somewhat normal. Even though he is missing a lot of school they are working with him.
Currently to this day Austin goes through severe migraines that start very sharp stabbing pain and progress to a full migraine, severe fatigue, flushing to the point of looking like sun poisoning, brain fog, memory loss, bone and joint pain, weakness, abdominal pain, diarrhea, severe constipation, anaphylaxis episodes that require an ER visit, slurred speech, night sweats, blurred vision, lightheadedness , passing out episodes, and tooth pain. The tooth pain is normal, the issue is his wisdom teeth are coming in straight forward. This means that the stress from his wisdom teeth will cause the illness to attach itself to the jaw and can cause brittle bones. The doctors are looking into a best route scenario for this. Because Austin cannot just go get them removed because it could be fatal.
The thing to understand with Austin is that anything can set him off in to an anaphylaxis episode at any given time. Anything means smells, medication, foods, insects, dust, temperatures in his surroundings, fabrics, germs, chemicals, animals, even people just to name a few. Strange thing is that he may have a reaction to one thing then next time not have a reaction to that same thing. This changes at any given moment and is another reason for him and his family to be on high alert also means he can never be left alone.
Then he has had some bone scans done just recently. The results are lesions throughout his skeleton and skull. Also, additional lesions inside his skull. His doctors are fighting to get him medications to help alleviate his symptoms but these medications are not approved here in the US for this disease. So, the family will have to pay around $1800 a month to get this one medication for him. Then to add to his treatment he will eventually be starting chemo therapy to help reduce the lesions in the very near future.
Austin will be 19 years old February 24, 2019 hoping he can graduate high school before the treatments start, but with time his illness just keeps progressing and all his family can do is make sure he is surrounded with love and happiness.
ASM (Aggressive Systemic Mastocytosis) will only get worse with time, the doctors only can help his symptoms and slow some of it down. They cannot make it go away. Eventually spreading to his organs and slowing them down.
With all that said Austin’s spirit is on a different page, he just keeps going like nothing is wrong with him. He doesn’t like people to worry about him and he said, “I will be like my great grandmother, I will get through this like she did her cancer that she had multiple times”.
Organizer and beneficiary
Eldon Blaylock
Organizer
St. Augustine, FL
Candace Seberig
Beneficiary
