Justin's Surgery Recovery Fund
Donation protected
We'd like to start with the sincerest THANK YOU for your kind words, donations, prayers, and positive thoughts. Our family is overwhelmed with the outpouring of love and support that we have received.
My brother Justin wasn't dealt the luckiest hand in life. He was diagnosed with Spinal Muscular Atrophy, a type of Muscular Dystrophy at age 1 (SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants). Now 27 years old, he has continuously beat the odds and bounced back from numerous near death experiences. With each bump in the road, large or small, Justin's resilience has given him the strength to miraculously recover, providing an solid example of how hard those diagnosed with SMA can fight, despite their bodies trying to give up on them.
In early July Justin had a large cyst drained in his throat that was preventing him from swallowing any food. Due to Justin's disease, he already had difficulty eating as his muscles get weak from chewing, therefore the cyst gave him additional troubles. Justin also has severe hypoglycemia. If he is unable to eat, his blood sugar gets dangerously low quickly; putting him at an extremely high risk of entering a coma. Unfortunately, the cyst returned.
We orginially thought surgery was going to solve this problem, but on Friday, August 19th we learned that Justin was unable to safely have the surgery that was initially thought to be possible. The second option of having the throat cyst drained again also isn't an option. Both procedures require sedation, which medical professionals refuse to perform on Justin without a tracheotomy--an incision in the windpipe made to relieve an obstruction to breathing.
This tracheostomy tube could be permanent; effecting Justin's ability to speak, eat, breathe, and live the rest of his life the way he chooses. If that's the case, Justin has decided to not live his life with the artificial windpipe. We think the surgery is the best answer to this issue, but also knew it would be risky, not a 100% guarantee, and a long recovery period in an Intensive Care unit for Justin.
After thinking there wasn't a surgical solution, on September 22 we received confirmation that a surgery was possible. On Friday, September 30th, the surgery successfully took place as the entire mass was removed from Justin's throat. Now we are waiting to see if substaintial improvement was made and if Justin will be able to swallow and eat.
Justin has been an Expert at Apple stores for about 3 years now and being in the hospital means he can't be at work; which is his favorite place to be. With short term disability insurance, he will still get about a 60% portion of his pay, but not enough to cover his rent, extra hours of personal care assistance during at home post-surgery recovery, groceries, and other everyday living expenses.
During this time, the last thing we want my mother or Justin worrying about is bills and expenses. Although he lives on his own, she's always on call, the best mom in the world.
In a perfect world Justin will be able to return to work soon, the cyst will go away, and the cure for SMA will appear.
Incase some of those things don't happen in the near future, his short term disability pay and your generous donations are currently covering his basic living expenses. I'm hoping to also get him a little extra so that he can fully enjoy whatever time he has left with little worries, maybe even get him on a mini vacation as he hasn't been on one in MANY years.
If you'd like to send a check to avoid the small fee being taken from the donation, please send me a message on facebook or comment below. Any little bit of support during this time is greatly appreciated!
All funds are tracked via spreadsheet and transferred to Justin as bills are due/as needed. All money raised will go directly to supporting Justin having the best quality of life possible.
My brother Justin wasn't dealt the luckiest hand in life. He was diagnosed with Spinal Muscular Atrophy, a type of Muscular Dystrophy at age 1 (SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants). Now 27 years old, he has continuously beat the odds and bounced back from numerous near death experiences. With each bump in the road, large or small, Justin's resilience has given him the strength to miraculously recover, providing an solid example of how hard those diagnosed with SMA can fight, despite their bodies trying to give up on them.
In early July Justin had a large cyst drained in his throat that was preventing him from swallowing any food. Due to Justin's disease, he already had difficulty eating as his muscles get weak from chewing, therefore the cyst gave him additional troubles. Justin also has severe hypoglycemia. If he is unable to eat, his blood sugar gets dangerously low quickly; putting him at an extremely high risk of entering a coma. Unfortunately, the cyst returned.
We orginially thought surgery was going to solve this problem, but on Friday, August 19th we learned that Justin was unable to safely have the surgery that was initially thought to be possible. The second option of having the throat cyst drained again also isn't an option. Both procedures require sedation, which medical professionals refuse to perform on Justin without a tracheotomy--an incision in the windpipe made to relieve an obstruction to breathing.
This tracheostomy tube could be permanent; effecting Justin's ability to speak, eat, breathe, and live the rest of his life the way he chooses. If that's the case, Justin has decided to not live his life with the artificial windpipe. We think the surgery is the best answer to this issue, but also knew it would be risky, not a 100% guarantee, and a long recovery period in an Intensive Care unit for Justin.
After thinking there wasn't a surgical solution, on September 22 we received confirmation that a surgery was possible. On Friday, September 30th, the surgery successfully took place as the entire mass was removed from Justin's throat. Now we are waiting to see if substaintial improvement was made and if Justin will be able to swallow and eat.
Justin has been an Expert at Apple stores for about 3 years now and being in the hospital means he can't be at work; which is his favorite place to be. With short term disability insurance, he will still get about a 60% portion of his pay, but not enough to cover his rent, extra hours of personal care assistance during at home post-surgery recovery, groceries, and other everyday living expenses.
During this time, the last thing we want my mother or Justin worrying about is bills and expenses. Although he lives on his own, she's always on call, the best mom in the world.
In a perfect world Justin will be able to return to work soon, the cyst will go away, and the cure for SMA will appear.
Incase some of those things don't happen in the near future, his short term disability pay and your generous donations are currently covering his basic living expenses. I'm hoping to also get him a little extra so that he can fully enjoy whatever time he has left with little worries, maybe even get him on a mini vacation as he hasn't been on one in MANY years.
If you'd like to send a check to avoid the small fee being taken from the donation, please send me a message on facebook or comment below. Any little bit of support during this time is greatly appreciated!
All funds are tracked via spreadsheet and transferred to Justin as bills are due/as needed. All money raised will go directly to supporting Justin having the best quality of life possible.
Organizer
Heather Miller
Organizer
Boston, MA
