Spearville's Byrum Bittel prepares for stem cell transplant

Over the past year, Byrum Bittel has dropped 50 to 75 pounds. He’s lost strength in his arms, and routine tasks have become more difficult.
    But he’s hoping an upcoming operation will help turn things around.
    The 15-year-old Spearville boy suffers from Duchenne muscular dystrophy, a genetic disorder that affects about 1 in 3,500 boys around the world. People with DMD experience progressive loss of muscle function and weakness, starting in their lower limbs and spreading to the arms, neck and other areas.
    Few people with DMD live past their 30s, and breathing complications and cardiomyopathy — an enlarged heart — are common causes of death, accoring to the National Human Genome Research Institute.        Byrum’s family knows there is no cure for the disease, but they are praying his upcoming surgery will buy him a few more years.
    The family learned recently that Byrum is eligible for a stem-cell transplant, an experimental treatment aimed at stopping the progress of his disease. The treatment will begin Jan. 31 at the Stem Cell Institute in Panama City, Panama.
    Byrum’s mother, Amanda Bittel, acknowledged that the transplant may not succeed in stopping the disease. But she said she’s keeping her fingers crossed.
    “There’s risk there,” she said in an interview Friday. “But considering there’s no other cure for Duchenne, we’re willing to take that risk.”
    
Deadly disorder
    The first clue that Byrum had DMD came when he was only 8 months old.
    Byrum had been in and out of the hospital with croup and pneumonia, and his lab work showed his liver enzymes were higher than normal — which might have indicated a liver disease.
    Byrum’s local doctor wanted to send him to a specialist in Denver. But before the family drove to Denver, the doctor checked Byrum’s muscles and heart, which indicated that he had muscular dystrophy.
    But the family did not know whether Byrum had Duchenne or Becker’s muscular dystrophy — a less common and slower-moving form of the disease.
    A muscle biopsy when Byrum was 3 years old revealed the truth: He was suffering from DMD.
    “It was devastating,” Amanda Bittel said.
    Byrum’s doctors thought he would be confined to a wheelchair by the time he reached third grade, but he managed to defy the odds for two more years. He started using a wheelchair when he was in fifth grade and eventually progressed from a manual wheelchair to an electric one, which he uses today.
    Despite the wheelchair, Byrum tries to stay active and optimistic. A paraprofessional helps him during the school day, and he does stretching and swimming exercises to keep his muscles limber.
    Byrum’s stepfather, Scheon Elledge, said it’s important to remember that Byrum is still a child and deserves a normal childhood.
    “I don’t look at Byrum as being much different than a typical teenager,” Scheon said. “He still doesn’t like to do his homework, but you’ve still got to make him do his homework. He likes playing video games, he likes — typical things that teenagers like. It’s just, he has to have the chair.”
    He said the family includes Byrum in every activity, whether it’s a trip out of town or a night at the races.
    “We’ve taken him to Worlds of Fun, we’ve taken him to Disney World, we take him to the lake,” Scheon said. “It may be a little more work, but he goes.”
http://www.dodgeglobe.com/news/x1966826711/Spearvilles-Byrum-Bittel...

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I hope anyone who reads this does not decide this is a good idea..This is frightening..
The family is doing what they believe is in the best interest of their son. No one has more potential risk or benefit than them. Byrum is old enough to understand his personal, medical situation and enough of the potential treatment to weigh in.

What's more frightening - doing nothing or doing something? I think they have researched it and made up their minds. You have to respect their right to decide whether inaction or action is more frightening.

I am going to pray for him, hope for him, and respect both their courage and decision.

-Bob





Lisa Groeger said:
I hope anyone who reads this does not decide this is a good idea..This is frightening..
I wish and pray for the best for him and his family.It is worth trying rather and sitting and doing nothing.Nothing is risk free.GOOD LUCK ...................


Bob Getler said:
The family is doing what they believe is in the best interest of their son. No one has more potential risk or benefit than them. Byrum is old enough to understand his personal, medical situation and enough of the potential treatment to weigh in.

What's more frightening - doing nothing or doing something? I think they have researched it and made up their minds. You have to respect their right to decide whether inaction or action is more frightening.

I am going to pray for him, hope for him, and respect both their courage and decision.

-Bob





Lisa Groeger said:
I hope anyone who reads this does not decide this is a good idea..This is frightening..
Living with DMD is frightening.....We as a community cannot judge or force our opions/fears on each other...I wish him and his family all the best!!!!!!!!!!!!!!!!!! Who knows, maybe their courageous decision might lead to a treatment for all our boys!!!1
I am not forcing my opinion or fears on others. I also resent the statement that because we are not chasing a quack to Panama to inject our sons with god knows what that we are doing nothing. Look at the science! Best of luck to them but they would be better served to spend their money elsewhere. Many people unfortunately in our community have done these types of treatments with no results. Don't you think that if this was something that was even remotely plausible as a treatment, it would be somewhere out there in mainstream medicine?? Also, we are all entitled to our opinion especially if something like this is posted on an open forum. I have been dealing with this disease for 12 years and I don't want some newly diagnosed parent to read this and get false hope from this article. There are many things going on in mainstream science to give us hope plus all of the advances in care options, technology etc. to enable our boys to live full lives..
From the article: "Over the past year, Byrum Bittel has dropped 50 to 75 pounds. He’s lost strength in his arms, and routine tasks have become more difficult."

I am not a medical professional but that seems like a lot of weight loss in one year.

I didn't see where someone tried to squelch an opinion. We're all certainly entitled to an opinion. That said, not sure introducing the word 'quack' in the thread makes any effort to treat the family with any respect as far as their intelligence or dedication. They know what they have on the line.

I had no wish to type something that generated resentment by any other parent. Apologies if somehow a reason for resentment was found.

The next best thing looks like the possibility of Ataluren in late 2011 at the earliest, approx a year from now. Unfortunately it only appears to slow the progression. Again, I lack a medical background. What currently available or imminent treatment(s) do you suggest for Byrum that they very likely haven't already been exercising?

Politely and respectfully,

-Bob



Lisa Groeger said:
I am not forcing my opinion or fears on others. I also resent the statement that because we are not chasing a quack to Panama to inject our sons with god knows what that we are doing nothing. Look at the science! Best of luck to them but they would be better served to spend their money elsewhere. Many people unfortunately in our community have done these types of treatments with no results. Don't you think that if this was something that was even remotely plausible as a treatment, it would be somewhere out there in mainstream medicine?? Also, we are all entitled to our opinion especially if something like this is posted on an open forum. I have been dealing with this disease for 12 years and I don't want some newly diagnosed parent to read this and get false hope from this article. There are many things going on in mainstream science to give us hope plus all of the advances in care options, technology etc. to enable our boys to live full lives..
FYI, this clinic in Panama was co-founded by Dr. Riordan, whose stem cell clinic in Costa Rica was closed down by their government. Search this forum for his name, you'll find lots of additional information.
I actually read a book by a guy who broke his neck and lived. He did a stem cell transplant and it did help give him more movement with his hands lower arms so that he could use a computer. The book is called Walking Papers & The Business of Getting on with Life. I have read that two other boys have had stem cell transplants in Panama City before that clinic was closed down. Since our President now supports stem cell research, then things should be moving along. Does anyone know if there are any trials with this or research going on? Char Burke
It's "imperative" that we bypass the accepted standards of care and take charge? So, those that choose to ignore unproven, potentially harmful "treatments" are somehow neglecting their sons?

Isn't that equally as judgemental as the sentiments you disagree with? Just saying....
I didn't put words in your mouth. I quoted your words. "It is imperative parents/people living with DMD take charge and by-pass the so far accepted slow and expensive way of doing things" - that's what you said. If that's not a judgement of those that do not choose to pursue alternative treatments, I don't know what is.

I'm not buying or selling - I've expressed no opinion here on this topic. Only pointed out a fact about the doctor involved and your seemingly contradictory statements.

Personally, I think the real value of an open board like this is to hear differing opinions - and yes, judgements. That's why they call it a "discussion" board. I think Lisa's posts here are completely appropriate for this kind of forum. Hearing all sides of an arguement only makes us all better informed and better able to make our own choices. I value her opinion, as well as yours. I use those opinions and facts to make my own decisions. If anyone's looking for validation of their choices, or for everyone to agree with them, a public internet forum is not the place for them.
I can certainly respect the parents risk assessment. But this article characterizing stem cell treament (I'm guessing Dr. Rader again) as his "best hope" is irresponsible at best, down right disgusting at worst.

Please realize that the Dodge Globe must sell it's stories and thus the hype. Any other parents or patients reading this must be very careful in this regard. Words like "breakthrough" or "best hope" can be just as damaging to our emotional state as words like "sudden cardiac death."

I also hope everything works out for Byrum. Let's just please remember to stay grounded and recognize hype for what it is.

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