Puyallup infant facing tough fight against rare disease
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PUYALLUP, Wash. -- Every parent knows what makes their children unique.
It can be in how they look or perhaps a special skill. For a Puyallup family, uniqueness comes in a dangerous genetic condition.
Seven-month old Casen Buswell is one of only 14 known people in the world with something called Glomuvenous Malformations Plaque Type.
He has visible lesions, spreading from his collarbone, over his shoulders, down his arms and torso. Plaque is hardening in his vessels, muscles and skin and could lead to heart failure.
The only doctors with experience treating GVM plaque type are in Belgium. The family travelled there over the summer and learned Casen will need monthly laser treatments, for as long as three years. The laser should stop the hardening of Casen's vessels, but the timing has to be right so he won't have to repeat the painful process right away.
They also want his brain to develop further, making him stronger to endure the anesthesia.
"There's two doctors in the US that have the technology to do it," said Casen's mother, Jenna Buswell. "But, it's a risk they would have to take in order to treat. There's so few, he would be number three that's ever been treated."
The domestic doctors recently told the family they can't take the risk.
That leaves only one option: Constant travel to Belgium or moving there for the course of treatment.
"Not a minute goes by that I don't think, how are we going to do this?" Jenna said. "How are we going to make it happen? But in my heart I know we have no choice. We have to do it."
Jenna guesses it will cost hundreds of thousands of dollars, even with insurance.
The family closely monitors Casen's progress - as they try to prepare for a long, expensive - but life saving journey.
If you would like to help, you can make a donation in Casen's name at any Harborstone Credit Union. You can also donate online here.
It can be in how they look or perhaps a special skill. For a Puyallup family, uniqueness comes in a dangerous genetic condition.
Seven-month old Casen Buswell is one of only 14 known people in the world with something called Glomuvenous Malformations Plaque Type.
He has visible lesions, spreading from his collarbone, over his shoulders, down his arms and torso. Plaque is hardening in his vessels, muscles and skin and could lead to heart failure.
The only doctors with experience treating GVM plaque type are in Belgium. The family travelled there over the summer and learned Casen will need monthly laser treatments, for as long as three years. The laser should stop the hardening of Casen's vessels, but the timing has to be right so he won't have to repeat the painful process right away.
They also want his brain to develop further, making him stronger to endure the anesthesia.
"There's two doctors in the US that have the technology to do it," said Casen's mother, Jenna Buswell. "But, it's a risk they would have to take in order to treat. There's so few, he would be number three that's ever been treated."
The domestic doctors recently told the family they can't take the risk.
That leaves only one option: Constant travel to Belgium or moving there for the course of treatment.
"Not a minute goes by that I don't think, how are we going to do this?" Jenna said. "How are we going to make it happen? But in my heart I know we have no choice. We have to do it."
Jenna guesses it will cost hundreds of thousands of dollars, even with insurance.
The family closely monitors Casen's progress - as they try to prepare for a long, expensive - but life saving journey.
If you would like to help, you can make a donation in Casen's name at any Harborstone Credit Union. You can also donate online here.
Couldn't they get a visa similar to a visitors visa here and stay in Belgium until the 3 years treatment is over? Ya, it means they won't be near friends and family but at least this little fella might have a chance.Â
Its going to cost more than a few hundred thousand dollars even with insurance. A nine day inpatient stay at Harborview will cost you close to $200,000; and that does not include the surgeons' fees. This family has to travel and take advantage of laser and unconventional medicine; this is going to exceed 7 digits I am afraid. I'm donating for sure.
@northwestsurfer yes but remember europe has a different health system and after one yr they can claim residency and maybe then the government will help if they have that kind of medical system or they might offer to do it for free because it is so rate good research
There is not a more helpless feeling when your child is in physical trouble. Blessings and hope to them.
Id be surprised if US insurance covered any of the procedures. Most providers have a history of denying life saving procedures if they think it is a bad bet.  It will probably cheaper for them to fly and stay in a hotel in belgium and pay out pocket for the procedure due to the fact that most European countries have managed to keep prices extremely low due to large bargaining power by universal health providers and strict medical inflation regulations.
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 @quidproquo I talked to someone yesterday who said he had an insurance company deny his child hearing aids, because it was cheaper to have her just learn sign language...insurance industry/ healthcare industry in this country is so sad.
 @two loons  @quidproquoÂ
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That seems ridiculous to me!! Do you know what insurance company this is?
It's hard to believe anyone could look themselves in the mirror, after giving that little selfish piece of  information to a family!!!
@two loons @quidproquo That is NOT the insurance's call for that child. That makes me furious! These insurance companies dictating on what treatment we should or should not receive is total BS.
@quidproquo @Eye4anEye @two
Dont worry guys. My insurance company tried to deny me coverage for preexisting condition last year (depression), which I appealed and won. They asked when I wanted to start coverage, so I told them at the beginning of the next month.
A few days later, I was in a bad accident that almost killed me, Insurance was not supposed to start for another week. Someone over there didnt do a good job of taking notes, and I convinced them that my policy was already in effect. I made two payments for that month and the next, on the spot, on the phone, while still laying in bed with a chest tube. "They" were on the hook for nearly $200,000 from that point on.
 @Eye4anEye  @two That's why when people scream about government in our healthcare and death panels I simply respond with - we already have death panels - they're called the insurance companies. I've known a few families who lost someone to suicide because they got a cancer diagnosis and they didn't want to financially destroy their family.  More than 68% of bankruptcies are caused by medical expenses and 75% of those had insurance.
I wonder if the family has any Army or Airforce connection- we have a base in Chievres, Belgium and Ramstein AFB is not far from Belgium. Â If nothing else they might be able to get in touch with people who could help co-ordinate travel or sponsor them. Â I don't know about the base in Belgium, but the newspaper here at Ramstein is called the Kaiserslautern American. Â Maybe they could run the story and get some contacts for the family over here? Â
 @Kate Jackson Eckroth Also, please look into any "Navy Wives Clubs of America" in their area. That group helps(even though it may only be a small amount) not only Navy families but ANY family who's needs are brought to their attention and if they or someone on their behalf asked for help. Just putting out ideas. I have a feeling that there will be a local fundraising drive event going on soon regarding this cause and I hope KOMO let's everyone know when and where this fundraising drive will be. KOMO, please keep us posted on any updates regarding this story.
The "bus lady" has $700k raised for her on this site:
http://www.indiegogo.com/loveforkarenhklein?c=home
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How is it possible that only $4k has been raised for this little boy?
 @RC Perhaps that will change with more exposure around the country. All of us who do the facebook thing (or other social networks) should post, and ask people to forward.
 @two loons  @RC I have posted to my facebook page and will ask people to forward it.This is a sad story and I truly hope this family gets some help.
 @RC The way I see it is, heartbreaking stories are kept local and many local donate to the cause however that doesn't bring in the entire fully needed funds. It's the heart pumping stories that anger everyone and that get national attention which obviously reaches more and gets more in donations. I have not checked yet but this family should post this on Youtube and everyone who sees it should share on Facebook/Myspace(I heard there are still few Myspace users still. LOL) or any social media. As much as someone may want to keep it a private matter and not make anything easier for the negative Nancy's(no offense meant to anyone named Nancy.lol) to have the opportunity to trash them(because we all know there will be some jackwad out there that will). If I were presented with such a horrible condition regarding my children, I would do ANYTHING to get them the help. I pray this family is able to not only get to Belgium for the treatments for however long they need to be, but more importantly that the treatment works so that this sweet little boy grows to know how much his parents sacrificed and worked hard to ensure he lives.
 @Robinsnest  @RC If his family posted this to Reddit, there could be a lot of support. I say family or a close friend should post, because reddit requires a lot of proof to post anything like this.
 @rc:Â
Probably because she "got" national attention, as opposed to this being a local story.
 @LocalLady  @rc: Not to mention more people can relate to an older lady being picked on by middle schoolers being disrespectful than a baby fighting something he's only been around for a year or so to suffer from.
I hope the family finds the way to do this for Casen's sake. I donated to his fund earlier this year as much as I could without setting myself back too much. Good luck to the family.
Prayers to this family. I wonder if they are doing any Vit C therapy since vit C has been known to clear plaque, plus being a very effective antioxidant.
My prayers go out to Casen and his family. Hope all goes well for this beautiful baby.
Hang in there little guy... wow.. that's a very hard road.
ONLY use links provided by the web host and do NOT use the one's provided in these comments. Be smart ;)
Hope and pray for this little guy.
Good luck beautiful boy Casen. Sending prayers for you and your family.
How horrible for that family. You'd think if "liability" is the only issue that the Doctors could get the family to sign some sort of a waiver acknowledging the risks and asking for the surgery anyway. Hang in there little guy; we're pulling for ya.
 @Petwlkr I agree with you on the waiver, but honestly if this were my child, I would want the doctors in Belgium to treat him simply because they have experience that the doctors here lack.
 @alaska_dreamin  @Petwlkr everybody lacks the experience. This child would be the 3rd ever treated.I've never understood the "risk" in a life saving procedure. If they mess up, the kid dies. If they do nothing, the kid dies. If it works the kid lives? Sounds like they should go for it, there is no way you can get worse then death/inevitable death.
@Jalharad @alaska_dreamin @Petwlkr I'm thinking doctors here don't want to have to deal with the massive lawsuit that would come their way here in the US - but it's too bad some doctor cannot consult with the Belgium doctors and get it done here.Â
Fix the link. Right now it points to: http://www.giveforward/CasenBuswell, i.e. the .com is missing. People cannot reach the campaign.
 @bigj Please see the link I posted below.
 @alaska_dreamin  @bigj just attempted to start a thread on reddit for this story - will see if that does anything.
 @bigj Never mind, KOMO fixed it.
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The link for donations appears to be broken, so here is the web address to make donations:
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http://www.giveforward.com/casenbuswell