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

Heartbreaking 8

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.

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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:

Have you ever heard of anything like this condition?

Image via ABC

baby health


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Allison Martin

Hey Linda, the link to donate redirects back to this page.  :)

dirti... dirtiekittie

that poor sweet baby and his incredible parents. i don't know that i could be so strong, and these people are amazing for dealing with this the best way that they can. i'd never heard of this ailment before, but obviously it's really, incredibly rare. i hope this baby boy can go on to have a normal and happy childhood!

Linda Sharps

Allison, thank you for catching that! It's fixed now.

Allison Martin

No problem :)  I am glad you shared this story, hopefully it'll boost their fundraising, I would so dearly love to see them be able to get him the help he needs.  I cannot even imagine.  As moms we know how full of hope we are for our babies... I just can't fathom what they must be going through.

Lovex23 Lovex23

My heart goes out to this family. I'll be praying for this beautiful boy everyday! I hope he gets all the treatment needed and can live a healthy long life!

Tashinha Tashinha

this is the sadest thing i've ever read :( that poor family!!

Tina Tortora

hope your little one gets the help soon my prays are with you all i could not think ok life with out my baby hope you find an answer soon

jj_bmom jj_bmom

God bless them ....I can't imagine not being able to cuddle and love on my children heart aches for them

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