These days, you hear about kids, girls mostly, looking like death itself. And, of course, you just KNOW what the problem is: They want to look like the supermodels, or the latest pop star. They are obsessed with becoming too fat. They’re becoming anorexic… or bulimic…or…or…suffering from Superior Mesenteric Artery ("SMA") Syndrome?
What the heck is that? I can’t even say it and most people have never heard of it.
Not even most doctors.
Look it up. You’ll find out that it is one of the rarest gastrointestinal disorders and seriously life-threatening. Only 0.013% of the population have it. But 1 in 3 cases are not diagnosed until autopsy. AUTOPSY!!!
And this is what your 12 year-old daughter is facing.
A major, 8-hour surgery, is the only hope.
This is a long, grueling surgery, especially when you take into consideration that she has already been through countless other surgeries and procedures. Like operating to putting in a G-J tube in to help the food get where it should be getting. And then another to unkink that same tube.
Then another surgery because the tube slipped out of position.
Count 8 surgeries to try to remedy this in a span of 3 months. Not to mention all the IVs and tubes and tests. All this BEFORE the major surgery.
Meanwhile, you sit by helpless, watching your baby lose more and more weight, teetering on the edge, edging closer critical levels and death. And she is in constant pain.
Before all the procedures and the surgeries, the doctors insist that your child has an eating disorder. She is put on a ward and force fed. She is visibly upset that the doctors don’t believe her. She is NOT purposely vomiting. She is NOT taking laxatives. She is NOT trying to lose weight. She is NOT lying. You as a parent are NOT in denial! To prove this, you have your daughter evaluated by both a psychologist and a psychiatrist. Both state that she does NOT have an eating disorder. But the medical doctors don’t believe. They torture her for almost a week in the eating disorder unit.
She’s in constant pain any time she puts the smallest morsel of food in her mouth. She can't keep anything down.
It takes 6 months for the doctors to diagnose the problem. Then they don’t want to believe their own findings.
Even after a test showed, clearly and unequivocally, that food can't get past her stomach, the doctors want to treat her as a psych case.
Does she have anxiety about eating??? Heck yeah, she does! Who wouldn't after months of pain and vomiting when you eat???
But is she anorexic?
Faking it? NO!
So you move her to another state, half way across the country, where there are specialists. Doctors who actually look at the facts of the case and don't let their prejudice and prior experiences blind them to what's right in front of them...a very MEDICALLY sick child in constant pain.
It is NOT an eating disorder.
It is NOT a spastic kid.
You are NOT a drama queen parent and you are NOT in denial.
It’s this SMA which the child was probably born with but didn't surface until her pre-teens.
Finally, she is medically stable. But she still can't seem to gain weight. Her stomach doesn't work, and it has shrunk to the size of a peanut. It hurts to eat. It hurts to drink. It hurts to sit down and even to lie down.
You watch your child who has been through 2 years of torture, withering away in front of your eyes.
As her mother, you have to make a choice: Keep using the advice of her current doctors to get her back to being a normal, healthy, 13 year-old despite the fact that you are losing ground every day, or pay a specialty hospital $33,000.00 per month to get her better. To save her life. And, of course, this hospital is out of state AND out of network. No insurance coverage at all.
The average length of stay is 2 months, so.... that’s $66,000 plus. And that is, of course, on top of the stack of medical bills that have already been accrued over 2 years of hospitalizations and procedures.
But, what choice is there?
So you send the child there and hope…no pray… you can dig up the money to pay for it later.
This is the story of my best friend, Noelle and her daughter, Honour. They have been through over two years of this nightmare... doctors, hospitals, feeding tubes, operations…moving from one state to another in order to find doctors, nutritionists, nurses and other specialists who know of this syndrome.
Which is why I am writing this blog/whatever this is.
Please consider helping this mother and child to move on with their lives without pain and without the weight of this additional financial burden. If you can help by donating even a small amount, and at the same time send this to anyone else who might be able to do the same, we can perhaps make this go viral and raise enough money for these two people.
If you can’t, just pray, and PLEASE pass/forward the message on to others. As I've said before, if a lot of people give even just a little, it will be a tremendous help.
Of course, if you have the whole $60,000 in your back pocket and can afford to do that…well actually this GoFundMe website doesn't allow donations that high…but if you have it…just send whatever you can.
If you want to read about this all from day 1, go to CaringBridge and look up Honour Valentine. Noelle used this wonderful website to keep all of their loved ones informed. You'll need to create a login, but it doesn't cost anything.
Thank you for taking the time to read and consider all of this. It is greatly appreciated.
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