4-year-Old Boy Growing Second Skeleton!
Filed under: Sad Sad
A 4-year-old boy in Watertown, N.Y., is one of only 600 confirmed cases worldwide of a debilitating genetic skeletal condition.
Sufferers of fibrodysplasia ossificans progressiva, or FOP for short, slowly develop a "second skeleton" with bone material forming across joints, muscles, tendons, ligaments and other connective tissue. The body is eventually frozen in calcium.
By the time Shane Terry is about 30, he will be restricted to a wheelchair. There is no cure for the condition.
So sad!!!!!!
At only 4, Shane doesn't understand that his rumbunctious behavior could harm him. A fall could provoke bone growth at the injury site. Because of this, Shane's mother, Kimberly, initially attempted to shelter the boy, but through the support of an online FOP group she learned that she needs to let Shane be as much of a "normal" child while he still can.
Shane's twin was stillborn 20 weeks into pregnancy and Shane already shows signs of the condition with a deformed vertebrae, pinky fingers, and big toes.
The average life expectancy for a person with FOP is 40 years.
Even sadder!
For now, all Shane has to think about is being a kid.
You know what they say, y'all, carpe diem!
[Image by Colleen White via Watertown Daily Times.]
Sooooooo sad!
Why oh why must children suffer? Sad
That's really sad, but at least his parents will allow him to live as "normal" as possible. And, hell, is there such a thing as "normal" anymore???? I mean everyone is different in their own way…
BTW, I think I might actually be first!!
That is incredibly sad -Poor boy, hopefully he has a happy chilhood.
God Bless this little boy. I'm thankful that my two kids were born 100% healthy.
Re: Netty G – Nope. Not first. Again.
Omg this makes me SOO sad! I'll pray for him
thats sad. poor kid.
On top of everything else this family has to endure–"FOP" for short???
Good luck to Shane and his family!
My daughter is that age. I couldn't imagine. I feel so bad for him and his family. It must be so hard to not be able to help your child. At least he is enjoying the time he can. Maybe they can find a cure by then. Always hold out for hope.
Very sad!
poor baby! god bless him & his family !
I teach high school and we actually have a boy in our Jr. High who has this disease. He's not totally confined to a wheelchair yet, but he's in a motorized wheelchair most of the time and can't walk unassisted or move his arms anymore. It's really sad. He's only 13 and his muscles are almost all turned to bone now.
That poor kid. I hope he lives his childhood good.
This is very sad–my son, who is 2 1/2, has a rare genetic skin disease called Epidermolysis Bullosa–so I feel for them when they say they try to let him lead as "normal" a life as possible–that's what I do for my son–his case is very mild and we can. The last week of October is national EB awareness week–everyone please check it out!!
It's so unfair when a child is born with a debilitating and/or life-threatening condition. This little guy has a long road ahead of him, as do his parents. My heart goes out to them all.
I taught jr. high at a school where a boy in the elementary school had this same disease. It was so sad because the parents did a great job of educating us all about about the condition, but he was so crooked and malformed already at 10. His condition was compounded by bruises and bumps so we all did our best to keep floors clear and be gentle all the time, but it was a K-9 school… hard to do that!
it's Grey's Anatomy, but in real life! that's so sad though - i can't imagine a kid having to go through life not being able to play like the rest of his friends for fear that his body will freeze up. poor thing.
AWWW, poor lttle guy, I hope that he has a happy life even though it may be shorter than expected ,I hope for him all the wonderful things that he wants.
I feel ashamed, after reading this story. Earlier today, I was angry with my son, over 'piddly shit'….when I should just be grateful that he is healthy and strong. This really put my heart and mind into perspective.
poor baby.
its horrible when things like this happen to a child, and they cant understand it
i hope he grows up and is able to live as "normal" as possible
i feel bad for his parents too
i went to school near watertown NY
SUNY Potsdam '05!
IF I WAS SHANES MOTHER I WOULD EUTHENIZE HIM.HE SHOULD BE PUT DOWN.NO ONE WANTS TO SEE A BOY GROWING A SECOND SKELETON.GROSS.
Re: TOUCANSAM –
put down ? he's not an animal. this boy should be able to live a life as normal as possible
aww pobrecito.
prayers.
is this the same disease that mick mars suffers from?
I'm friends with a guy who has this disease, he's 18 now and has little movement. i thought this was so interesting that u posted this article because i know someone like this…its so sad
God Bless Him!!!
There was a Grey's Anatomy episode about FOP last season that really explained the condition well, its so crazy and sad!
i've heard of this before. i can't even imagine what that must be like… what goes through their minds when they can't move and they can only sit and think all day. what happens if their faces end up freezing, how do they eat? feeding tube i guess?
I am a 19 year resident of this area and understand the economic/geographic hardships of this area. I now live in NYC so I understand that many of you don't understand how magnified the need is for a case like this in Northern NY. Please, look into you hearts/on a map and try to understand the monumental need this child and his family will have for the rest of his life. Not only for medical care, but for travel, because the clinics Shane will need are very far away and very expensive to get to. Please, please, please if you left a comment, consider donating at least a dollar to his fund. Your sympathies are always appreciated, and if you have the means, a dollar would never be shunned. Perez would not have put this up if he didn't believe in this child's cause. Thank you so much.
I saw an episode with this condition on grey's but didn't know this was a proper condition. This is so sad for the poor boy and his family especially that he can't lead a normal life and has to be wrapped in cotton wool to keep him from any more discomfort.
Thanks Perez for getting the news about this horrible disease out there. My daughter works with a 8 year old girl with FOP. It's heartbreaking!!! If you only give to one cause this should be it.
Damn. Now this is what the focus should be on, not politics.
Re: Oh Resist Her – i was thinking the same thing- about grey's anatomy!
I am a mother of an child with FOP. What you should know is that the gene for this genetic disease was found in April 2006. But even better, it is the gene that essentially controls bone growth. A cure to this disease will mean a cure for many, may other bone related diseases such as arthritis, osteoporosis, spinal cord injuries, and many others. www.ifopa.org for more info or to donate.
:(
Oh wow!
This is so sad.
At least he gets to be a child while he still can.
Re: green*eyes – very very sad
Bless his heart. Man, it just takes a story like this to make you appreciate your health, doesn't it? (Or, in my case, the little bit I have left - at least I didn't get chronically ill/disabled when I was a little one, like this little man)
He's in my prayers and I hope he will just get to focus on being a kid for as long as possible!!
Re: MaggieMay –
Well, my parents' kids aren't perfectly healthy. Thank God they love us regardless! My Mom has been a CHAMP for me - I have no idea what I would have done without her, fighting by my side and fighting for me when I am too ill to stand.
this makes me want to cry ..why must people have to go thru things like this? its just not fair..its not fair at all.
awwwwwwwwwwwwwwwwwww omg thats sucks but i dont reallly understand the second skeliten thing
The 4 years old boy; I hope they are willing to make him feel comfortable and extremely loved. I think it's a real sad situation but life is not always fair.We will keep them in our prayer.
OMG THIS IS RIGHT BY ME!!! =O
Re: TOUCANSAM – to TOUCANSAM i would like to say F*** you. Shane is my cousin and awesome little boy, he is the happiest little guy I've ever met. I don't understand why anyone would ever say such a thing. This really crushed my family when we saw this,Its very upsetting. Shane is not an animal he's a human being and it really does not matter what other people think or say on a blog, but hearing nice things from people is a great thing, Shaner has a family that loves and cares about him so much. We do not need your negative input you piece of shit.
Re: TOUCANSAM – Its really sad that there are people like you in this world. Its hard to believe you could post something like that…yet alone think that way! You obviously don't have kids or you don't deserve to ever have any. It makes me sick that Shane will have to go through his life struggling to live but yet not deserving a piece of shit like you saying such hurtful things! I hope you rot in hell!!!
Re: chocolatmocha – He is VERY much loved…and every friend and relative is there to support them.