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Baby's Tragic Disease Makes Hugging Too Painful. Have you ever heard of anything like this condition?

Posted by on Oct. 3, 2012 at 12:44 PM
  • 6 Replies

Baby's Tragic Disease Makes Hugging Too Painful (VIDEO)

Posted by Linda Sharps on October 3, 2012 

It would be a sad, pointless exercise to try and imagine what the worst disease might be for a baby to have ... but if I were to put my mind to such an unhappy task, 7-month-old Casen Buswell's illness would surely be at the top of the list. Little Casen has an extremely rare vascular condition -- so rare, in fact, that he's one of only 14 in the world known to have Glomuvenous Malformations Plaque Type.

Casen's condition causes his blood vessels, skin, and muscles to harden. His vascular malformation covers his chest, belly, arms, upper shoulders, and back, and it causes him extreme sensitivity. He can't be hugged or cuddled like a normal baby, because touch of any kind is painful for him.

As terrible as Casen's story already sounds, it gets worse.

The condition, which is caused by a missing glomulin gene, will only worsen as Casen gets older. The growth of his lesions are expected to continue 'til age 1, after which the impacted areas will harden and thicken. If he doesn't receive an extremely specialized sort of treatment, Casen may eventually experience heart failure.

More from The Stir: Baby's Rare Disease Mimics Child Abuse & Devastates Family

There's only one doctor in the world who has ever treated patients with GVM-Plaque Type, and he's in Belgium. Casen's parents, unfortunately, live in Puyallup, Washington.

Casen will need monthly laser treatments up until the age of three to prevent his body from hardening. It's his only shot at a healthy life, so his parents are obviously doing everything they can to make sure this happens. Each trip will cost many thousands of dollars, though, and that doesn't even include the genetic testing they've undergone (which wasn't covered by insurance), and costs related to the diagnosis.

As the family's bills mount up, Casen's condition continues to spread. According to his mother,

He's most comfortable when in a diaper and able to lay out and not have that compression, even from clothing. The touch is nerve-wracking. I want to cuddle him. I want to hold him, but when that cry comes that I know is the pain, it's hard not to think that I just did that.

Oh, my heart just breaks for this family. I cannot begin to imagine what they're going through -- as nightmarish as their situation sounds, it seems unspeakably cruel that Casen's parents can't hold him and comfort him like they must be aching to.

I hope by some miracle Casen gets all the treatment he needs, and that he gets a chance to live a normal childhood. If you'd like to donate to Casen Buswell's medical fund, you can do so here. They have a goal of $50,000 ..... and a long way to go before they reach it.

Here's a video about Casen and his family:

Video


Have you ever heard of anything like this condition?

by on Oct. 3, 2012 at 12:44 PM
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Replies (1-6):
godsgirl26
by Bronze Member on Oct. 3, 2012 at 1:45 PM
No, i have never heard of this before.
Posted on CafeMom Mobile
Matriarch87
by on Oct. 3, 2012 at 1:48 PM

crying

Thats horrible.  That poor family, that poor baby...I can't imagine... 

MistressMinerva
by Jennifer on Oct. 3, 2012 at 2:40 PM

Very Sad.

LilyPondOasis
by on Oct. 3, 2012 at 9:11 PM

Thats so very sad --- poor little guy. I read about this. 

I do not know what I would do if I could not get my huggie loves ( Hugs and kisses as we call them ) from my DS every day! 

Hope things will change for him as he grows....one can hope! 

Pammi86
by Pamela on Oct. 3, 2012 at 9:15 PM

No and that poor baby. Breaks my heart!

delanna6two
by Platinum Member on Oct. 7, 2012 at 7:42 AM

No, my 1st. hearing....

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