Terry's Fight
the battle to beat
a deadly disease
a deadly disease
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Terry, as we all know, is a bright, handsome and loving little 8 year old boy, who's smile has never left his face through all that he has been through in the last 3 years.
In February of 2007 he started developing a limp in his left leg and I immediately took him to Stony Brook Emergency Room and all x-rays were normal. I then took him to another doctor , who told me to get him to a specialist at Good Samaritan Hospital to where a CAT scan was performed. It showed some abnormalities and upon other MRIs they had found white matter in his brain. Bloodwork was ordered and the quest to find out what this was was on. Initial impressions by the doctors was ALS (Lou Gerhig's Disease). All bloodwork kept coming back negative. Next possibility was ALD (Adrenoleukodystrophy) a very deadly disease. Bloodwork came back negative for that. They were baffled and after a head-to-head confrontation with The Good Sam doctor I found myself, along with Terry's medical records, at Schneider's Children's Hospital. They performed bloodwork and MRIs and all they could come up with was Cerebral Palsey. Wow, a metal walker and braces sure beats a wooden casket, what great hope this was until his eyesight became blurred, double-visioned and, as he called it, little white floaty things, very much not indicative of Cerebral Palsey. More tests!!!!
I did some research and thought that Lyme Disease could be causing all of this, so through local tests not much came back but I was very vigilant as to my research and persued this with a DO whom I found through The Empire State Lyme Disease Association. His initial examination and further testing proved that Terry had Lyme Disease. We put him on Amoxycillin and his eyesight cleared up within two months. His balance seemed to get better and we thought we were on to something good. He continued PT and OT through Blue Point Elementary, who has been so great with what they have done for him, he also has PT during the week with an outside source. He continued to just stay where he was at. The Amocycillin was discontinued in February of 2009 due to risk factors of long term usage.
I decided to take him to a 3rd neurologist in 2009 out of Stony Brook. First impression, ALD, AGAIN!!! Another MRI and bloodwork was sent down to Kennedy-Kreiger Institute. They told the neurologist to check for Schilder's Disease and Krabbe Disease. Bloodwork was sent to a Dr. Wenger in Philadelphia and it came back positive for Krabbe, a terminal disease who's juvenile form is usually deadly within 2-7 years of initial symptoms. I was devestated. I then turned to a Dr. Kolodny out of NYU and they confirmed the diagnosis. Wow, only 3 years to find out why my boy could hardly walk, see and write. I was told that the Amoxycillin definitely helped him because they did clinical trials and found that it is a blocker for ALS and Canavan Disease, both Leukodystrophies. He is currently back on it. We are now, as of 11/20/09, waiting on Dr. Kurtzberg, out of Duke University, to have us come down there to possibly do a stem cell transplant. He has to do a week of testing but I'm confident this is going to happen and my prayers have been answered. We will be down there for 6 months but all my friends, bandmates and family know this is a good thing.
I am starting this website to keep all friends informed as to how my son is doing through all this. I also want to use this for other parents who have children with this horrible disease that hope is there and I will try to do daily updates and provide videos and pics. Terry's fight is a fight he will win!!!
11/24/09, Tuesday:
Talked to NYU Neurogenetics today, looks like the insurance company got everything they need to approve his first visit and series of tests for next week. Should know something tomorrow they tell me. We'll see!!!
In February of 2007 he started developing a limp in his left leg and I immediately took him to Stony Brook Emergency Room and all x-rays were normal. I then took him to another doctor , who told me to get him to a specialist at Good Samaritan Hospital to where a CAT scan was performed. It showed some abnormalities and upon other MRIs they had found white matter in his brain. Bloodwork was ordered and the quest to find out what this was was on. Initial impressions by the doctors was ALS (Lou Gerhig's Disease). All bloodwork kept coming back negative. Next possibility was ALD (Adrenoleukodystrophy) a very deadly disease. Bloodwork came back negative for that. They were baffled and after a head-to-head confrontation with The Good Sam doctor I found myself, along with Terry's medical records, at Schneider's Children's Hospital. They performed bloodwork and MRIs and all they could come up with was Cerebral Palsey. Wow, a metal walker and braces sure beats a wooden casket, what great hope this was until his eyesight became blurred, double-visioned and, as he called it, little white floaty things, very much not indicative of Cerebral Palsey. More tests!!!!
I did some research and thought that Lyme Disease could be causing all of this, so through local tests not much came back but I was very vigilant as to my research and persued this with a DO whom I found through The Empire State Lyme Disease Association. His initial examination and further testing proved that Terry had Lyme Disease. We put him on Amoxycillin and his eyesight cleared up within two months. His balance seemed to get better and we thought we were on to something good. He continued PT and OT through Blue Point Elementary, who has been so great with what they have done for him, he also has PT during the week with an outside source. He continued to just stay where he was at. The Amocycillin was discontinued in February of 2009 due to risk factors of long term usage.
I decided to take him to a 3rd neurologist in 2009 out of Stony Brook. First impression, ALD, AGAIN!!! Another MRI and bloodwork was sent down to Kennedy-Kreiger Institute. They told the neurologist to check for Schilder's Disease and Krabbe Disease. Bloodwork was sent to a Dr. Wenger in Philadelphia and it came back positive for Krabbe, a terminal disease who's juvenile form is usually deadly within 2-7 years of initial symptoms. I was devestated. I then turned to a Dr. Kolodny out of NYU and they confirmed the diagnosis. Wow, only 3 years to find out why my boy could hardly walk, see and write. I was told that the Amoxycillin definitely helped him because they did clinical trials and found that it is a blocker for ALS and Canavan Disease, both Leukodystrophies. He is currently back on it. We are now, as of 11/20/09, waiting on Dr. Kurtzberg, out of Duke University, to have us come down there to possibly do a stem cell transplant. He has to do a week of testing but I'm confident this is going to happen and my prayers have been answered. We will be down there for 6 months but all my friends, bandmates and family know this is a good thing.
I am starting this website to keep all friends informed as to how my son is doing through all this. I also want to use this for other parents who have children with this horrible disease that hope is there and I will try to do daily updates and provide videos and pics. Terry's fight is a fight he will win!!!
11/24/09, Tuesday:
Talked to NYU Neurogenetics today, looks like the insurance company got everything they need to approve his first visit and series of tests for next week. Should know something tomorrow they tell me. We'll see!!!
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/Metabolic_Storage/GLD_and_Tx/index.html
http://content.nejm.org/cgi/content/full/338/16/1119
Just a few links about this disease and what they might be doing to Terry in a couple of weeks
http://content.nejm.org/cgi/content/full/338/16/1119
Just a few links about this disease and what they might be doing to Terry in a couple of weeks
11/25/09, Wednesday:
Talked to Terry's personal physician that's been assigned to him during his stay at Duke University Hospital, Dr. Kristen M. Page, today. What a pleasant conversation. Kinda filled me in as to what to expect at first, 2-3 weeks of testing, then hopefully by the first of the year chemo will start for 9 days then the stem cell will be introduced into his little body. He will be in-patient for 2 months then out-patient for 4 months. A lot of back and forth to the hospital and other facilities for therapies and tests. Schooling will be provided so he can keep up with his class in NY here and go to fourth grade with his classmates!! She talked about them working on living arrangements for me and then for me and Terry when he's transferred to out-patient status. A lot to take in and absorb, all for the best!!
