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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Just FYI.  I am Byrum Bittel's uncle.  The "quack" comment pissed me off.  There is over 2 years of research by my sister, who by the way is a surgical RN, into what options were available to Byrum.  Also, he is not a guinea pig in this.  This is an established procedure.  Are there risks?  Of course there are.  The other option is to just watch him go downhill until the end.  If we have to wait on the FDA to even start examing options, we are all in trouble.  It takes 12 to 18 months to set up the software just to enter your information to submit to FDA for first phase.  I've heard about that nightmare from a college buddy who troubleshoots the code.

He is an awesome, unbelievably ornery, kid.  The wheelchair kid gets more detention and girl's attention than any other kid in his school. 

Every year we do our MDA walkathon and raise really good money for research.  It is a great event and for a small group of us, we do killer money count.  Thats fine and we will keep doing it, but it doesn't do anything for this kid right now. 

I totally back my sister's move on this.  I hope and pray that this is successful for him, but hopes and prayers with inaction would be inexcusable on our part.

By the way, if someone has US options for gains (leave the holistic stuff off) I'm open to hear them.

Thanks for speaking up!!  Speaking for myself and I think most on this site...we want nothing but the best for your nephew and the rest of the family....Living with DMD is not an easy or predictable  lifestyle.All of us have different ways of dealing with it,some like the stability of mainstream medicine to get them through it, some like your sister, have the courage and strength to take the road less traveled...and this usually winds up helping all who have the same problem....I also agree we can't judge each other!!! What is right for one may not be right for the next...What this site is here for and what we all need is support and real info..... not condemnation.... I hope  your family will continue to keep us updated on Byrums progress!!! He will be in my thoughts and prayers....who knows...he could be the brave young man who brings to light a treatment for all our boys.....Karen                                                                                                                                                                   FYI.  I am Byrum Bittel's uncle.  The "quack" comment pissed me off.  There is over 2 years of research by my sister, who by the way is a surgical RN, into what options were available to Byrum.  Also, he is not a guinea pig in this.  This is an established procedure.  Are there risks?  Of course there are.  The other option is to just watch him go downhill until the end.  If we have to wait on the FDA to even start examing options, we are all in trouble.  It takes 12 to 18 months to set up the software just to enter your information to submit to FDA for first phase.  I've heard about that nightmare from a college buddy who troubleshoots the code.

He is an awesome, unbelievably ornery, kid.  The wheelchair kid gets more detention and girl's attention than any other kid in his school. 

Every year we do our MDA walkathon and raise really good money for research.  It is a great event and for a small group of us, we do killer money count.  Thats fine and we will keep doing it, but it doesn't do anything for this kid right now. 

I totally back my sister's move on this.  I hope and pray that this is successful for him, but hopes and prayers with inaction would be inexcusable on our part.

By the way, if someone has US options for gains (leave the holistic stuff off) I'm open to hear them.

By the way if anyone wants to know how things went and you are on Facebook, look up Byrum Bittel Stemcell.

Everything went great.  Good reports from the docs.  No adverse reactions.  looking at 6 weeks to 3 months to see if he has any gains.

On top of that, they got to see some amazing things like the Panama Canal with a US Nuclear Sub going thru (first time in 6yrs that had happended).  They also did a rainforest cable car ride.  Pictures on the Facebook site show the doc office visits and what they got to do while there.  My sister even posted pics of the area and how people treated them.

Thanks for the update...I'm praying for Byrum!!!!! Please thank him for taking these chances...He's a brave, young man!!  

Robert Headrick said:

By the way if anyone wants to know how things went and you are on Facebook, look up Byrum Bittel Stemcell.

Everything went great.  Good reports from the docs.  No adverse reactions.  looking at 6 weeks to 3 months to see if he has any gains.

On top of that, they got to see some amazing things like the Panama Canal with a US Nuclear Sub going thru (first time in 6yrs that had happended).  They also did a rainforest cable car ride.  Pictures on the Facebook site show the doc office visits and what they got to do while there.  My sister even posted pics of the area and how people treated them.

UPDATE: Ok, it was seven years ago when I last posted on this thread about my nephew, Byrum Bittel. The kid who was not supposed to make it to 16 years old is now 22. Been in college and now advancing to medical records management.

Can you please share how stem sell therapy has effect his health?how about walking?or did this stem therapy helped him in respiratory or cardio function?Thanks for updating here in forum. 

Robert Headrick said:

UPDATE: Ok, it was seven years ago when I last posted on this thread about my nephew, Byrum Bittel. The kid who was not supposed to make it to 16 years old is now 22. Been in college and now advancing to medical records management.

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