Hope for Alexis

 
Raised: $86,526.00
Goal: $50,000.00
 
 
 

Created by

Jennifer Shapiro

131 Friends

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We want to thank everyone!!! People who have shared, donated, or left a nice supportive message. We have been trying to thank everyone personally. But, I am only to 900 out of 1,971 peop... more

 
 
 
 
 
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Updated posted by Jennifer Shapiro 12 days ago

I know we have said it before. Thank you doesn't seem like enough. The kind heart of so many who have fallen in love with Alexis through her story and pictures. If it weren't for all of the supporters we would not be seeing our beautiful daughters health improve so much! We are so excited to see the progress she has already made. It's thanks to everyone who believed in us! Thank you so so much!

 

 
 

Updated posted by Jennifer Shapiro 1 month ago

Hello to everyone! I wanted to let you know if you have sent us a message, I am trying to answer them. But, it might be a little bit. We are amazed at how many people have been supporting us. Thank you so so much!!

 
 
 

Updated posted by Jennifer Shapiro 1 month ago

We want everyone to know as we get ready for this upcoming surgery. We are nervous and excited. We thank everyone so so much! We are so lucky to have so many people supporting this surgery and Alexis. Thank you!!!!! So amazing

 

 
 
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Created by Jennifer Shapiro on July 22, 2013

We want to thank everyone!!! People who have shared, donated, or left a nice supportive message. We have been trying to thank everyone personally. But, I am only to 900 out of 1,971 people. So I'm really sorry if you have not received a thank you message yet. Please know how thankful and grateful we are. It's an amazing feeling to know how many people have wanted to make sure Alexis gets her surgery. Which will be the end if March. Thank you to everyone!! We hold onto HOPE that this surgery will be successful. Alexis needs a better quality of life.










As many of you know Alexis was diagnosed with a rare brain tumor called a craniopharyngioma in 2011. It caused damage to the most important parts of her brain. She has no function of her hypothalamus, or pituitary gland. This has left her with several life threatening conditions. Most we control with replacement hormones and medication. However, the one thing we have not been able to control is something called hypothalamic obesity. it is a beast and we have tried so hard to control it. but, it has been found that no amount of diet or exercise will stop this obesity. Alexis has gained about 140lbs in not even 2yrs. It has been heartbreaking for her and for us. She can not do the things she used to love.



So i am seeking bariatric surgery for her. We found a dr. Who has done this with other patients similar to Alexis. He is very kind and experienced. We talked about it with Alexis and she Wants to do it even though she knows it will be hard work. But, she is used to hard work.


If it was only that easy.we received the denial from Tricare. Frustrating!! We plan to appeal however, nothing with tricare is easy or fast. Alexis has had many hospital admissions. Problems caused by her weight which then causes more serious problems due to her panhypotuitarism . She needs to be as healthy as possible to keep from going into an adrenal crisis. This is so important to us. Alexis is suffering from this weight and we want to fight for her. Please join us. We met the team in Cincinnati and we love them. I fully trust them with Alexis. We will be making 3 more trips to Ohio at least. This fund will help us do that! We thank everyone.


Alexis has made some grey ribbons ( brain tumor awarness) So if you donate please let us know how many you would like. she can make a pin or a magnet.
 
 
 
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I'm so happy when I see an update about Alexis. I get my tissues before I read. I'm gonna cry either way. Great job kiddo and keep up the hard work....it's already paying off. To your mom and dad...you guys are awesome. Darlene Wilmer - bad taste

posted by Michelle Palladino 10 days ago

Alexis, honey, I see the twinkle in your eyes. You are one amazing little lady. God has a plan for you sweetie. I pray that you will soon be outrunning everyone in your neighborhood. Take care and let the world know how you are doing.

posted by Carolyn Lee 10 days ago

I had gastric bypass surgery in 1987 because my stomach grew together from a disease called eosiniphillic gastroenteritis. My vagus nerve was severed to help me. Now I have been diagnosed with two pituitary tutors which are affecting my hypothalamus gland. I have no appetite and have to watch my weight all the time. I got down to 74 lbs. 2 years ago and have to be fed through my port from time to time. It is not easy, but you can deal with what you have to! I am so sorry you have to deal with all of this at your young age, but I know what a strength my walk with The Lord can give you! Hang in there, Alexis. Take it one minute at a time! You can do this! Your surgery was a huge blessing! Do not get discouraged now! You have come so far!! Keep on going! If you want to talk to me ever, go to my Facebook page. We are Byron and Melodye Nagel in Madison, IN. I will pray for you every day, Alexis and for your Mom and Dad and siblings! Love, Melodye

posted by Byron Nagel 10 days ago

I am so happy the insurance company is paying. Glad so many people helped. I believe the $ people gave is very important to help with her path going forward. This is just the start of the hard work ahead. Read that you were giving out thank you magnets to donors. If you would like imprinted magnets I would be happy to help you design them and donate 5000 of them. I was also thinking one of the kids weight lose summer camp might be fun for Alexis. I have fought with my weight since I was in kindergarten. Always wanted to go to a weight loss camp as a kid but we could never afford it. Alexis you go girl...i am rooting for you and your great family. Hugs Mary

posted by Mary Calcagno 13 days ago

God Bless you Alexis. Your story touched me in a big way. I know life may seem hopeless at times, but always remember that you are beautiful and special. My two boys want you to know that they are praying for you as well. They are angry that kids were mean to you and wish they went to school with you so they could be your friend! Good luck with the surgery...lots of love!!! :)

posted by Lindsey Wallace 15 days ago

I have two kids who have made cards for Alexis. They would love to send them to her if you have a PO box or address you could message me :) Your family continues to be in our prayers!

posted by Sky-Laurie Hoffman 16 days ago

Dear Alexis, I just read your story in People magazine. I think you are a very brave and beautiful young girl. I hope your surgery helps you alot. Life is unfair sometimes but I believe with your family and so many others praying for your recovery good things are going to happen for you. Bless you and lots of love.

posted by Karen Heckler 18 days ago

I am glad Alexis is doing well and I am curious but since the insurance did pay for her surgery are you going to donate the money raised to help some other child who needs it or return it to those who were kind enough to donate? I am not being unkind but these kind people sent donations so she could have her surgery I believe it would be wrong for you to use it as a windfall and not pay it forward to some other child in need.Good luck to Alexis

posted by Darlene Wilmer 19 days ago

Sending healing vibes and positive energy. :-) &

posted by Kat Keen 20 days ago

Hi Jenny, Alexis,Ethan,Ian and Kayley I just read about you all in people I was very touched by your story. You seem like such a strong young lady, you certainly are a beautiful young lady :-) . You certainly showed your strength, courage and beauty by sharing your story! More people should know about Hypothalamic Obesity. I also followed up on the article, I see you had the sleeve on 321. I used to work as a MA in a bariatric clinic I a lot about that surgery it will give you a good start. I wish you a speedy recovery. Hope to hear an update on how your doing down the line....love the wonderful support!!

posted by Ladrena Rakowski 22 days ago

Hi Alexis! I'm lying here in bed with my mom and we just read the article in People about you. Your story touched me in a way that I have never felt before. Though it is nowhere near comparable to you, I have some body issues of my own. I used to have an eating disorder and continue to carry around a terrible self-image of myself. However, I want to say that you are absolutely beautiful. As my mom always reminds me, beauty comes from within. Looks fade over time. You seem so loved and so cherished. I would love being friends with you. I know what it's like to feel alone; no one should feel that way. Mrs. Shapiro- I would love to create a pen-pal relationship with your daughter. If you ever read this, please add me on Facebook. Tons of prayers to you and your family! I care about you Alexis. You are gorgeous sweetie. Ariana Shockley

posted by Ariana Shockley 24 days ago

Hi, Alexis and family! I just learned about you and hope you are recovering well from your surgery. I live in Cibolo too. Your mom can contact me when you are up to having a play date. I will bring my granddaughter with me. Take care. I am praying for you!

posted by Debbie Peasland 26 days ago

Alexis, I want to wish you the best with your Sleeve Gastrectomy as well as your Gastric Bypass. My name is Maria Caprigno and I had a sleeve gastrectomy when I was 14 years old and weighed 443 pounds. Over the past 4 years I have lost 140 pounds and have done a lot of work in the fight against Childhood Obesity. I just want to offer you my support and tell you that I have been there and that I wish you the best of luck. If you ever want to talk to another "pediatric" bariatric patient, you can contact me through Facebook or my email which is Riat519@aol.com

posted by Maria Caprigno 27 days ago

Alexis, you are a very brave young lady! Thank you for speaking out about the effects of craniopharyngiomas. It is a nasty, nasty tumor. I know first hand as my then 9yr. old granddaughter had one removed in 2012. She has all the hormone problems that you have. She is now 11 yrs. She has not gained the weight but since the tumor rested on her optic nerve, she has only 25% total sight...blind in one eye and 1/2 sight in the other. She too is on a 1200 calorie diet which she hates. I would love to help get the word out to researchers. What can I do?

posted by Penny Hull 27 days ago

Girl, you're beautiful. I'm hoping for a speedy recovery for you. Hang in there.

posted by Michael Gullett 28 days ago

We live right nearby in San Antonio. My daughter would like to have a play date with alexis as soon as she is ready. She loves littlest pet shops, Barbie, art and absolutely loves the movie Frozen. Let Alexis know that there will be a special package on its way to the PO box soon. We have a surprise for your precious girl. --The Dolder Family

posted by Melissa Dolder 28 days ago

Prayers. My dad had a craniopharyngioma removed in 2008. Would love to sspeak with you and share stories.

posted by Lauren Rhoadarmer 28 days ago

Hi Jennifer. My family has dealt with a very similar medical situation. We know very well how challenging and overwhelming everyday life is. We will continue to pray for immediate relief from these circumstances. My daughter, Sophia, that had the brain tumor, had a couple of amazing friends that helped her through that very difficult time. One was an old friend she had known since pre-k but the other was a new friend. I will also pray for that for Alexis. And please do not feel obligated to thank everyone personally. A blanket thank you should suffice for everyone, or their intentions are misplaced. Alexis needs your attention more. Sincerely, Theresa Mohler

posted by David Mohler 28 days ago

Hi, Alexis. I hope recovery from your surgery goes just as planned. I'm sure this journey has been long for you and no doubt hard. Never give up and love yourself every single day!!! Your strength and beauty is inspiring, keep it up!

posted by Charleah Trombitas 29 days ago

Thinking of you and praying your surgery goes well. You are such a strong and beautiful girl. Sending love and hugs to you!!!

posted by Amy Bartles 1 month ago

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Recent Donations (2,113)

$86,526 raised by 2,113 people in 9 months.

$20.00

Abby Bauer

5 hours ago

 
 

You and your husband seem like wonderful parents and I can't imagine what it must feel like watch your child go through this condition. It sounds like Alexis is making great progress even with this latest setback. This wonderful news - we will keep your family in our thoughts and prayers.

 

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Deborah Valentine

9 hours ago

 
 

My heart goes out to dear Alexis. I pray that your surgery is a success and you return to the active happy girl you were. God Bless You Alexis and your family! You can do it!!!

 

$25.00

Roisin Greene

19 hours ago

 
 

God bless your little girl. I look at my own daughters and hope that all is successful for you.

 

$10.00

Anonymous

4 days ago

 

$50.00

Stephanie Roldan

5 days ago

 
 

Slow and steady wins the race. Recovery may feel slow going but hopefully in a year from now, you'll have loads of energy and a new lease on life! Best of wishes, Alexis!

 

$25.00

Allstate Will Peterson Agy

10 days ago

 
 

Love, Love, Love

 

$20.00

PJ Price

10 days ago

 
 

Best Wishes, Alexis!

 

$25.00

Joann DiLeonardo

11 days ago

 
 

You are beautiful!

 

$10.00

Anonymous

11 days ago

 

$50.00

Anonymous

11 days ago

 

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