Just so everyone can put a face with the story, you can see Zach and the family featured in an episode of "Mystery Diagnosis" that was originally aired last year... Mystery Diagnosis .
Most of the scenes of Zach as a baby were actually filmed using his younger brother, Brandon. Even though Brandon does not have MPS, they still looked alot alike when Zach was Brandon's age.
Zach also has a mention in Newsweek magazine... Newsweek .
We're shooting for an episode of Oprah, but so far no luck.
In other news Josh and I have decided (okay, I decided he just agreed) that we should get a stationary bike to use for training for the race. I figure that once I bulid up a little stamina, and perhaps drop a few pounds that I can then progress to actually jogging.
Josh, who thinks it's fun to jog around the block while jumping rope AT THE SAME TIME, is apparently not worried about his own stamina. However he is a bit concerned about the prospect of having to carry me. He has floated the idea of bringing a wagon that I could sit in and be pulled just in case.
I'll have to think about that one.
Monday, July 28, 2008
Friday, July 25, 2008
Surgery for Zach
After meeting with Zach's ortho, Dr. Michael Jofe yesterday, we have decided to go ahead with spinal surgery for Zach.
Although it isn't typical for Hunter's patients, Zach has a severe kyphosis in his spine, and since it is progressing, there is a chance it could put pressure on his spinal cord. By placing rods along his spine, the surgeon is optimistic that this can be prevented.
There have been a few differing opinions on the need to have the surgery at this point among the different Drs. treating Zach. We thought about it hard, did our reasearch and came to the conclusion that this was the correct decision.
When you have a child with a severe medical condition you are often faced with these decisions, and they're really hard to make. Perhaps once I get "never promised tomorrow" off the ground helping parents facing these decisions can be one of the things I do.
Although it isn't typical for Hunter's patients, Zach has a severe kyphosis in his spine, and since it is progressing, there is a chance it could put pressure on his spinal cord. By placing rods along his spine, the surgeon is optimistic that this can be prevented.
There have been a few differing opinions on the need to have the surgery at this point among the different Drs. treating Zach. We thought about it hard, did our reasearch and came to the conclusion that this was the correct decision.
When you have a child with a severe medical condition you are often faced with these decisions, and they're really hard to make. Perhaps once I get "never promised tomorrow" off the ground helping parents facing these decisions can be one of the things I do.
Thursday, July 24, 2008
Wednesday, July 23, 2008
How the blog got its name...
I'm sure people will wonder how I chose the name for my blog.
Well, here it goes..
The phrase "never promised tomorrow" is something I started to truly follow as a philosophy when Zach was diagnosed. While he was in essence given a death sentence, I realized that doesn't make him any different than any of us. There is no guarantee that any of us are going to wake up in the morning. While Zach's life may end up being shorter than most, it doesn't mean that it should matter any less. Nor does it mean that he shouldn't get the chance to experience as much as possible in the time he has.
It's a phrase I use when talking with parents of children with life threatening illnesses. I want them to realize that none of us know how long we are going to be around on this Earth. If you spend all of your time planning for death, you forget to live.
We are never promised tomorrow, and in that sense Zach isn't different from any of us.
Well, here it goes..
The phrase "never promised tomorrow" is something I started to truly follow as a philosophy when Zach was diagnosed. While he was in essence given a death sentence, I realized that doesn't make him any different than any of us. There is no guarantee that any of us are going to wake up in the morning. While Zach's life may end up being shorter than most, it doesn't mean that it should matter any less. Nor does it mean that he shouldn't get the chance to experience as much as possible in the time he has.
It's a phrase I use when talking with parents of children with life threatening illnesses. I want them to realize that none of us know how long we are going to be around on this Earth. If you spend all of your time planning for death, you forget to live.
We are never promised tomorrow, and in that sense Zach isn't different from any of us.
Tuesday, July 22, 2008
Virginal Post - Oh crap why did I agree to this?
Greetings blog readers out there.
By way of introduction, my name is Robert. I'm a resident of South Florida, married with three sons.
My middle son, Zachary (8yo) suffers from a rare genetic disorder known as Hunter's Syndrome or MPS 2. It is a progressive disease that attacks all of the body's systems and in severe cases leads to a greatly shortened life span.
Support for families dealing with MPS and related diseases, and funding for research to develop treatments is provided by an organization known as the National MPS Society. The society also leads efforts to raise awareness of these diseases in order to ensure that children are diagnosed quickly enough to benefit from available treatments.
Of course this is a difficult undertaking, and one that needs both constant financial support, and efforts to spread awareness on the part of its members.
My oldest son Josh (9yo) has asked recently what we can do to raise money for Zach's medical needs, as he sees the daily struggle to provide him with care for his disease.
For some reason the thought popped into my head that I could run a marathon as a way to both raise awareness of MPS and funds for both Zach and the MPS Society.
This was probably not a bright thought.
In my glory days in high school I was a distance runner on the track team. I'd jog 2 miles to school in the summer for football practice, then jog 2 miles home after it was over. I went for a 10 mile jog one night just because I felt like it. I was in shape - no doubt.
However, this was 20 years and 100 pounds ago.
I'm not in that bad of shape I guess. Generally I don't break a sweat walking to the kitchen for some ice cream. I'm not short of breath going up stairs until at least the second floor. I've got sore knees and a herniated disk in my lower back and asthma.
In other words I'm your typical marathon runner.
Okay, reality check - maybe a marathon is too much at this point. Maybe I could do a half marathon? The Miami marathon at the end of January also has a half marathon, I could shoot for that. At worst I could walk it - how bad could it be?
So, as with all life threatening decisions I make, I talked this idea over with my wife. She was generally supportive except for a few concerns:
1) I would injure my back further.
2) I would injure my knees.
3) I would die.
If I could manage to avoid those pitfalls she gave me the okay.
Now this is the fun part. Upon hearing of my plan, Josh said he also wanted to do the run. Much like myself years ago, Josh is in good shape, loves sports, etc.
I have no doubt he can handle the run with some training.
Having a training partner should make things fun, however I'd rather have a running partner that could pick my big ass up and carry me to the finish line if needed.
I'm impressed that at nine years old he is willing to get out and do something to help his brother and others like him. Most kids his age are preoccupied with television and playstation. Well, in all honesty Josh is pretty into TV and video games himself but apparently he is willing to put down the remote in order to help raise awareness of MPS.
He's a good egg.
Now that I've dragged someone else into this folly, I guess I'm going to need to get into shape.
By way of introduction, my name is Robert. I'm a resident of South Florida, married with three sons.
My middle son, Zachary (8yo) suffers from a rare genetic disorder known as Hunter's Syndrome or MPS 2. It is a progressive disease that attacks all of the body's systems and in severe cases leads to a greatly shortened life span.
Support for families dealing with MPS and related diseases, and funding for research to develop treatments is provided by an organization known as the National MPS Society. The society also leads efforts to raise awareness of these diseases in order to ensure that children are diagnosed quickly enough to benefit from available treatments.
Of course this is a difficult undertaking, and one that needs both constant financial support, and efforts to spread awareness on the part of its members.
My oldest son Josh (9yo) has asked recently what we can do to raise money for Zach's medical needs, as he sees the daily struggle to provide him with care for his disease.
For some reason the thought popped into my head that I could run a marathon as a way to both raise awareness of MPS and funds for both Zach and the MPS Society.
This was probably not a bright thought.
In my glory days in high school I was a distance runner on the track team. I'd jog 2 miles to school in the summer for football practice, then jog 2 miles home after it was over. I went for a 10 mile jog one night just because I felt like it. I was in shape - no doubt.
However, this was 20 years and 100 pounds ago.
I'm not in that bad of shape I guess. Generally I don't break a sweat walking to the kitchen for some ice cream. I'm not short of breath going up stairs until at least the second floor. I've got sore knees and a herniated disk in my lower back and asthma.
In other words I'm your typical marathon runner.
Okay, reality check - maybe a marathon is too much at this point. Maybe I could do a half marathon? The Miami marathon at the end of January also has a half marathon, I could shoot for that. At worst I could walk it - how bad could it be?
So, as with all life threatening decisions I make, I talked this idea over with my wife. She was generally supportive except for a few concerns:
1) I would injure my back further.
2) I would injure my knees.
3) I would die.
If I could manage to avoid those pitfalls she gave me the okay.
Now this is the fun part. Upon hearing of my plan, Josh said he also wanted to do the run. Much like myself years ago, Josh is in good shape, loves sports, etc.
I have no doubt he can handle the run with some training.
Having a training partner should make things fun, however I'd rather have a running partner that could pick my big ass up and carry me to the finish line if needed.
I'm impressed that at nine years old he is willing to get out and do something to help his brother and others like him. Most kids his age are preoccupied with television and playstation. Well, in all honesty Josh is pretty into TV and video games himself but apparently he is willing to put down the remote in order to help raise awareness of MPS.
He's a good egg.
Now that I've dragged someone else into this folly, I guess I'm going to need to get into shape.
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