Phillip's MMN treatment fund
Donation protected
Hi, my name is Katherine and I am here to try to raise funds for my son's treatment for a neuromuscular disease that he has just (November 12th, 2015) been diagnosed with. Multifocal Motor Neurapothy is an extremely rare disease that affects less than 1 person in 100,000.
Phillip is 17 and has been a rower for his highschool team for 4 years. This year he is Captain and President of the team. In June, he started noticing that his right hand was weak, in that he was having trouble gripping the barbell for more than 3 reps at a time. By September it was becoming difficult to write for extended periods of time. We finally got in to see a neurologist who pointed out that the muscles in his hand were totally atrophied. We then made appointments for MRI's, and with a Neurosurgeon who then did nerve tests called EMG's and finally her collegue Dr. Tuan Vu did a nerve conduction test and blood tests that verified that it was indeed MMN. MMN is a progressive disease. Phillip's antibodies are attacking his nerves and will continue to debilitate his entire body unless treatment is administered. He needs an intravenous treatment of a "drug" called IVIg (Immunogobulin) which is over $30 THOUSAND dollars each month until the progession stops but even then it will need to be managed throughout his life. The insurance company has REFUSED treatment and I am in tears most all of the time when Phillip's not around. He is being very strong but I know he's scared by some things he's said.
Phillip is a gifted young man in SO MANY ways and he is always willing to help someone. He's at the top of his class and still, even with this illness, ROWING COMPETITIVELY!! Without treatment, however, he will continue to deteriorate and eventually be unable to use his arms or stand.
If you have in in your heart to help my beautiful son, please do. I am a single mother (he's my only child) working 2 jobs and this nightmare is almost too much to bare but I MUST stay strong for him.
Thank you for your consideration and if you decide to help Phillip, I thank you from the bottom of my heart and PRAY that you NEVER experience ANYTHING like this.
God Bless.
Katherine
Phillip is 17 and has been a rower for his highschool team for 4 years. This year he is Captain and President of the team. In June, he started noticing that his right hand was weak, in that he was having trouble gripping the barbell for more than 3 reps at a time. By September it was becoming difficult to write for extended periods of time. We finally got in to see a neurologist who pointed out that the muscles in his hand were totally atrophied. We then made appointments for MRI's, and with a Neurosurgeon who then did nerve tests called EMG's and finally her collegue Dr. Tuan Vu did a nerve conduction test and blood tests that verified that it was indeed MMN. MMN is a progressive disease. Phillip's antibodies are attacking his nerves and will continue to debilitate his entire body unless treatment is administered. He needs an intravenous treatment of a "drug" called IVIg (Immunogobulin) which is over $30 THOUSAND dollars each month until the progession stops but even then it will need to be managed throughout his life. The insurance company has REFUSED treatment and I am in tears most all of the time when Phillip's not around. He is being very strong but I know he's scared by some things he's said.
Phillip is a gifted young man in SO MANY ways and he is always willing to help someone. He's at the top of his class and still, even with this illness, ROWING COMPETITIVELY!! Without treatment, however, he will continue to deteriorate and eventually be unable to use his arms or stand.
If you have in in your heart to help my beautiful son, please do. I am a single mother (he's my only child) working 2 jobs and this nightmare is almost too much to bare but I MUST stay strong for him.
Thank you for your consideration and if you decide to help Phillip, I thank you from the bottom of my heart and PRAY that you NEVER experience ANYTHING like this.
God Bless.
Katherine
Organizer
Katherine Hampton
Organizer
Tampa, FL
