Saving Jamison from his Teeth.
Donation protected
Jamison Currie is a loveable goofball. If you’ve met him, you know how his sense of wacky has brought you a whole new joy, and unleashed a silliness to try things you thought you had outgrown. He loves life, and he loves people. He loves helping people love life even more. His peers put him on homecoming court because they, too, have learned to live larger with Jamison. We all have.
His bountiful spirit rises above the chair he is unable to stand from, and his energy outpaces his atrophied legs and the hands that are curled inward from Lesch-Nyhan Syndrome (LNS), which promotes the gross overproduction of uric acid in his body leading to some behavioral oddities. This male gender disease affects 1 in 380,000 individuals. When Jamison’s body acts out against him, in involuntary muscle movements, jerking, or flailing, he just finds a way to laugh about it all, and put others at ease, so it is soon forgotten.
Until recently, Jamison was able to cope with the other complicated side of his disease. It reverses certain neurological signals, so that the body begins Self-Injuring Behavior (SIB). Due to the excruciating pain of a misdiagnosed broken knee, and surgery four months ago, Jamison’s own teeth have turned against him. What started as biting back screams of pain, became a runaway train. The harder a boy or man with LNS tries to stop biting at himself, the more the mind reverses the "Stop!" signal to further terrorize him. They. Can. Not. Stop. The ONLY way to stop it, is total removal of the teeth. Most LNS patients have complete teeth removal done, early in life, because restraints will not stop it, and they will lose their lip, tongue, and finger tissues if the teeth are not completly stopped by removal. Until recently, Jamison’s SIB was minimal.
Today, Jamison’ s self-injury has spiraled out of control and he has begged, repeatedly, to have his teeth taken out. For the past 3 months his parents have been trying to work with OHSU OFMS to have all his teeth extracted. Their scheduling and insurance has been nothing short of a prolonged nightmare. Even finding an oral surgeon willing to do the procedure was hard. There is only one in the state who will do it. Then, there was a two month mindbend of postponements, mis-labeling as “electoral” type procedure instead of LNS disease protocol, processing errors, cover up lies, and eventual Medicaid denial, ending with a $10,000 gap for the Currie family.
There is NO WAY they can produce this cost. If they could, it would have happened three months ago. Instead, they have been watching Jamison, in round the clock care, at a loss of parent wages, as his own teeth chew on him and he sinks further and further into a spirit shadow. He sleeps with the enemy, and the enemy is winning. He is defeated. The Jamison we know, has all but disappeared. He is haunted by his own teeth and feels the entire world has forgotten him.
I DON’T THINK WE HAVE!!! There is a surgery date on the calendar for June 3 (with a possibility for postponement) and he desperately needs to get those devilish teeth out of there, just as soon as possible, to bring back Our Jamison, and the light in the eyes of the Currie family. I am setting the goal at $11,000 to cover the GoFundMe processing fees and undisclosed costs at the hospital. Please dig deep, implore your friends, substitute a personal activity, revector a tithe payment, set up a donation cup at the office, or rally the bake sale and car wash signs.
If everyone who has ever seen his smile, or hopes to again, contributed to the pot, we could save him from a mind that has tuned against him and bring him back to a zest for life.
(Note: Both Jamison and his parents have sincerely requested that current picture proof, of his graphic facial and digital deterioration, not be a part of this campaign. Please respect that wish as public shame is the furthest thing from our intent to help.)
His bountiful spirit rises above the chair he is unable to stand from, and his energy outpaces his atrophied legs and the hands that are curled inward from Lesch-Nyhan Syndrome (LNS), which promotes the gross overproduction of uric acid in his body leading to some behavioral oddities. This male gender disease affects 1 in 380,000 individuals. When Jamison’s body acts out against him, in involuntary muscle movements, jerking, or flailing, he just finds a way to laugh about it all, and put others at ease, so it is soon forgotten.
Until recently, Jamison was able to cope with the other complicated side of his disease. It reverses certain neurological signals, so that the body begins Self-Injuring Behavior (SIB). Due to the excruciating pain of a misdiagnosed broken knee, and surgery four months ago, Jamison’s own teeth have turned against him. What started as biting back screams of pain, became a runaway train. The harder a boy or man with LNS tries to stop biting at himself, the more the mind reverses the "Stop!" signal to further terrorize him. They. Can. Not. Stop. The ONLY way to stop it, is total removal of the teeth. Most LNS patients have complete teeth removal done, early in life, because restraints will not stop it, and they will lose their lip, tongue, and finger tissues if the teeth are not completly stopped by removal. Until recently, Jamison’s SIB was minimal.
Today, Jamison’ s self-injury has spiraled out of control and he has begged, repeatedly, to have his teeth taken out. For the past 3 months his parents have been trying to work with OHSU OFMS to have all his teeth extracted. Their scheduling and insurance has been nothing short of a prolonged nightmare. Even finding an oral surgeon willing to do the procedure was hard. There is only one in the state who will do it. Then, there was a two month mindbend of postponements, mis-labeling as “electoral” type procedure instead of LNS disease protocol, processing errors, cover up lies, and eventual Medicaid denial, ending with a $10,000 gap for the Currie family.
There is NO WAY they can produce this cost. If they could, it would have happened three months ago. Instead, they have been watching Jamison, in round the clock care, at a loss of parent wages, as his own teeth chew on him and he sinks further and further into a spirit shadow. He sleeps with the enemy, and the enemy is winning. He is defeated. The Jamison we know, has all but disappeared. He is haunted by his own teeth and feels the entire world has forgotten him.
I DON’T THINK WE HAVE!!! There is a surgery date on the calendar for June 3 (with a possibility for postponement) and he desperately needs to get those devilish teeth out of there, just as soon as possible, to bring back Our Jamison, and the light in the eyes of the Currie family. I am setting the goal at $11,000 to cover the GoFundMe processing fees and undisclosed costs at the hospital. Please dig deep, implore your friends, substitute a personal activity, revector a tithe payment, set up a donation cup at the office, or rally the bake sale and car wash signs.
If everyone who has ever seen his smile, or hopes to again, contributed to the pot, we could save him from a mind that has tuned against him and bring him back to a zest for life.
(Note: Both Jamison and his parents have sincerely requested that current picture proof, of his graphic facial and digital deterioration, not be a part of this campaign. Please respect that wish as public shame is the furthest thing from our intent to help.)
Organizer
Tonya McQuistan Nichols
Organizer
Los Angeles, CA