Weight Loss Surgery Now Possible for Alexis Shapiro,Thanks to Crowdfunding

    December 29, 2013
    Jerrica Tisdale
    Comments are off for this post.

At the age of 10, Alexis Shapiro developed  a craniopharyngioma. A craniopharyngioma is a rare benign brain tumor that affects about 1 in every million child a year. Luckily Alexis was able to undergo surgery to remove the tumor. However, she developed hypothalamic obesity. Hypothalamic obesity is a rare disease that causes hypothalamus damage.The hypothalamus controls appetite and metabolism. As a result of the condition, Alexis’s body thinks it’s starving despite her constant eating and weight gain.  More than half the children who have similar tumors develop this disease.

Alexis at  only 12 years old, and 4 feet 7 inches, weighs 198 pounds. Her doctor fears that if she doesn’t receive surgery soon, she could get up to as high as 400 pounds. Alexis’s family wants her to undergo a gastric bypass operation to potentially save her life.

Since the extreme weight gain, Alexis has developed other health issues, like kidney infections and type-2 diabetes. Despite Alexis’s serious health problems, her health insurance company has denied the family’s request for her gastric bypass surgery.The insurance company that supplies health care for the family, TRICARE’s spokesperson Austin Camacho said,in an email to NBC News, that “in general, our Managed Care Support Contractors are required to approve or deny coverage based on TRICARE policy. We have an appeals process in place specifically designed to give our medical professionals the opportunity to examine the details of any special cases when coverage is denied.”

The main reason Alexis was denied surgery because TRICARE’s policy only allows people over 18, or those with full bone growth, gastric bypass surgery. Dr. Thomas H. Inge, a Cincinnati expert on Alexis’s case believes that the health insurance company should make an exception, because this surgery could be the only thing to stop Alexis’s unhealthy eating habits. Alexis’s parents have tried everything from restricting her diet to locking up food at night to stop her weight gain,but nothing works.

To try to get the surgery without the insurance’s help, Alexis’s mother, Jennifer Shapiro, started a GoFundMe campaign. She hoped to raise the $50,000 needed for the gastric bypass operation.  Alexis’s GoFundMe page currently has raised more than it’s goal and growing. This is great news for the Shapiro family. Now, hopefully Alexis can receive the life saving surgery she needs.

Image, Via GoFundMe

  • http://scallywagandvagabond.com scallywag

    Weight-loss surgery is not foolproof. There are people who have the surgery (any of the available procedures), lose weight, and then regain it. It is possible to defeat the surgery and nearly 50% of people who lose weight with such surgery have regained their lost weight by 5 years! This is why the good weight-loss surgery programs require extensive evaluation and counseling before and after this procedure. In this girl’s case, the surgery will not be magical and, with her body perceiving that it is “starving,” she will have do develop appropriate strategies to avoid defeating the surgery. Prescription medication, to reduce her appetite, would likely be necessary, also.

    However, the insurance company is absolutely correct here. Just because she’s fat does not mean she has not stopped growing. And just because she’s fat does not then mean that once she stops eating and assimulating food, the endocrine issues goes away. On the contrary, the endocrine damage, if left untreated, will get worse if there is not enough diversity of nutrients. Her bone growth can indeed be stunted (and that leads to issues later on in life) . And lets remember, gastric surgery only works for a few years, and can lead to damage later on. There are serious issues of saiteity and health problems with gastric bypass long term.

    • Traci Weber

      Scallywag– Are you a doctor? Do you have experience with craniopharyngiomas?

      When a person gets a diagnose of cancer, they receive chemo and or radiation which also doesn’t guarantee success. But, they do get it.

      I’m sure if you are your child were Alexis, you would think twice about your response.

      Traci Weber~ Proud mother of a child who also was the victim of a craniopharyngioma…


      Are they sure she doesn’t have Cushings Disease/Syndrome? I had a benign brain tumor on my pituitary-it caused excessive weight gain/fatigue/diabetes etc…please have another Endocrinologist check this out before she has bypass surgery. Bypass surgery won’t cure the issue causing the weight-that needs to be addressed. It just looks like she has excess cortisol being made in her body…its hard to diagnose, but have them do a 24 hr urine test, and check cortisol levels….please-do this before she has bypass surgery-


      Scallywag is correct in a lot of points. This is a little girl who needs the nutrients especially being a child who is still growing. Her Endocrine issue needs to be addressed. Oh my goodness-this issue just makes me so sad for her-please take her to another Endo to have her evaluated.

      • The Mama

        My son also had a craniopharyngioma- which is a tumor of the pituitary. Nearly all of these patients have little to no endocrine function of their own, and everything has to be replaced with medication. I can almost promise you that her endocrine issues are very well addressed because if anything gets out of whack it can be deadly. You have a close and constant relationship with the endocrinologist with this type of problem. Like my son, she most likely takes a ton of cortisol just to be able to stay alive, which certainly doesn’t help with the weight issue. We do have a problem with uncontrollable hunger, but thankfully not to the degree that this sweet girl has. Another point is that when these tumors are removed, there is very often incidental damage done to the frontal lobe of the brain, which controls impulses. Add that to being hungry all the time, and it’s just a bad combination.

  • http://WebProNews Carol

    Traci Weber – are YOU a doctor? Just because you’re the parent of a child who suffered from this condition doesn’t mean you know anything about the surgery her parents want her to have. Scallywag is most likely correct. Am I a doctor? No. But without exception, everyone I know who’s had any kind of stomach stapling or bypass surgery for weight loss has a) gained the weight back; b) experienced complications – to include bowel replacement, extreme weight loss that cannot be reversed, stomach staples coming undone and causing acids to enter the peritoneum, dehydration and bowel obstruction; or c) both a&b. I understand that every parent wants their child to be healthy, and never to die. But there needs to be a limit to what kinds of treatments are given. Were the parents aware this condition could result from the tumor surgery? Were there other options than surgery? Because there is so much social media available, we often get part of the story that causes knee-jerk reactions.

  • Candice

    This surgery is only good for a maximum of 5 years and than it has to be repeated. If this child lives a normal life expectancy, around 80 years, she will have to have this surgery 14 times!

    Atkins/Ketogenic diet has been found to be as effective as bariatric surgery without the many profound lifelong negative side-effects of bariatric surgery. Atkins/Ketogenic has also been found to eliminate Type 2 diabetes. Combine Atkins/Ketogenic with gluten-fee and the results are amazing. Has Alexis been place on Atkins/Ketogenic diet to see if this would take care of her diabetes and not only stop weight gain but reverse it?

    • Jennifer

      Actually, gastric bypass can not be repeated. During gastric bypass most of the stomach and duodenum are removed. These do not re-grow so no need to repeat the surgery. However, most of your vitamins and minerals are absorbed in the duodenum. Most people who have a gastric bypass end up taking injections to get these vitamins and minerals since their duodenum is gone. That would be my main concern with such a young person having gastric bypass. However, if they have found a surgeon willing to do the surgery then they have probably exhausted all other options.

  • Jennifer O

    As someone who has had gastric sleeve surgery, I cannot understand how bypass surgery will help her. The disorder is with the hypothalamus which regulates just about everything in the body to create homeostasis. She is on a reduced diet and exercise and it is not working. With bypass etc u are on reduced calories big time and vitamins, but wouldn’t her brain still think its starving and store whatever food she is eating? Would the route of the problem be with the hypothalamus itself and the issue of how to re-regulate the hypothalamus be more of an issue to be addressed. Im sure she could drink pediatric ensure 3 times a day and still gain wait. I don’t think bypass surgery will fix this issue.

  • trace

    often bypass can be dangerous with craniophayngioma patients, i know some that have died.
    The obesity isn’t a factor before the brain surgery– it is the surgeon damaging the brain- usually not the tumor. a diagnosis of brain tumor gets everyone in a panic- to do something immediately whatever and whoever can remove it— when in reality this is slow growing, and can wait until proper means to remove or radiate it. Only an experienced “cranio” surgeon should EVER remove one given the side effects of brain damage. This obesity disease is a byproduct of brain damage. usually by surgeon, and steroids . tragic.

  • Jorge

    The chances of this working is 0 the doctors know it …any one familiar with this is well aware of this .her only hope is to lock up the food. Sad but true

  • Jorge

    This won’t work ask the doctor..

  • Jorge

    This won’t work ask the doctor..

  • Jorge

    This won’t work ask the doctor..

  • Elwap0

    This will only make things worse