Allie's Surgery

$17,834 of $24,000 goal

Raised by 136 people in 40 months
Diane Cale Stewart
on behalf of Angelle Skelly
 STAUNTON, VA
This is my warrior granddaughter, Allie. Just about the time all young girls start becoming interested in fashion, dating, driving, and being with friends, Allie started having unusual physical problems. After a frustrating four-year odyssey, she's been diagnosed with EDS (Ehlers-Danlos Syndrome), a connective tissue disorder. The symptoms and pain are horrific. In addition, she has Mast Cell Activation Disorder, Postural Orthostatic Tachycardia Syndrome, Fibromyalga, Dysautonomia, and Gastroparesis. Way too many things for a 17 year old to have to deal with, right? Allie is my hero and inspiration, for she deals with pain every moment of every day, and yet she still smiles and keeps fighting.

In hopes of alleviating some symptoms, Allie, now 17,  underwent a serious brain surgery in February, and part two of that plan was a back fusion. It's time for the surgery, but the costs are overwhelming.

Allie and her Mom (our daughter Angie Case Skelly) need transportation to and from Florida to NY, as well as expenses while there for two weeks, a special new mattress, and many medications (already her medications cost over $1000 a month). Her mother will not be able to work for at least 4 weeks and possibly more, and will lose this income, as she is self-employed. They have not even begun to pay the actual hospital/drs'. bills from the first surgery, and unfortunately, due to a change in insurance, they will be responsible for a good chunk of the cost of this one as well.

We hope to arrange the surgery for next month; Allie really cannot wait much longer without negative consequences.

If you spent 10 minutes with Allie, you would be blown away by her courage, her resiliance and determination. She has big plans for her life (she wants to be a pediatrician so she can help other children), and we know she can achieve them when she receives the treatments she needs. Please consider helping us help Allie! She will help change the world one day.

Thank you so much.
Diane
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Dear faithful friends and family: After nearly a year of testing, treatments, more testing, and lots more testing, Allie and Angie arrived in NY today to continue Allie's healing journey. She will be in the hospital next week, undergoing in-patient traction to further diagnose and decide what comes next. She has a wonderful specialist, and we are hopeful that we can find a path forward. Thank you all again for helping us get her back there, and please continue to send positive energy her way!
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Hello all! This is Angie, Allie's mom. We felt like it was time for an update as many of you have been asking about Allie's progress. She has not had surgery yet, but your funds have still been incredibly helpful as we move forward. We seem to have come to a yet another medical roadblock. When we Skyped in early May with the orthopedic surgeon who helped with Allie's neck and brain surgery he ended with "let's put her on the schedule for the end of May" for her low back fusion surgery. However, a Skype with his neurosurgeon partner (who was also a part of her surgery) several weeks later revealed that they had reconsidered a fusion surgery and were now leaning toward the diagnosis of tethered cord- which would be a whole different surgery. After a flurry of emails (but no new tests and no improvements in Allie's condition) they are now saying no surgery at all at this point. While we are not hoping for surgery if it is unnecessary, we are not OK with leaving Allie with a back that slides in and out of place rendering her unable to move one or both of her legs. So we begin the fight to understand and diagnose yet again. We have not given up on these drs but will need to continue to Skype with them - and your funds have made this possible. (Skype appointments are $300 a pop and are not covered by insurance.) She is still on medication that costs $1200 a month and your funds have helped to make that so much less stressful. We will have to have new tests done and have begun to speak with new drs as we strive to figure out what path to take and they all involve hefty copays that would be impossible without these funds as well. And of course we are keeping some aside in the event we do end up having to fly to New York for surgery. I can't begin to tell you the peace of mind it has given me to know that there is money designated toward making her life better. And I can't thank all of you enough for helping us to make that happen. We send big hugs to each and every one of you and hope that your summer is going well! Hopefully we will have some good news to share soon!
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Update from Angie:
Hi Facebook family! We were able to Skype with Allie's back surgeon in New York today. He agrees that it is time for the surgery. Her back slides out of place and causes temporary paralysis in her legs and sometimes her arms as well. He has a few tests that he wants info from prior to surgery. One is an EMG of her lower extremities which she was hoping to avoid as it involves needles and electric currents - ugh! But better to go in with as much info as possible. He is going to try to get her on his schedule for end of May. We are happy to have the process started but of course not excited at the idea of what lies ahead. This week has been a "crash" week for her as she pushed so hard to be part of everything last week. Hoping that once she has the surgery she won't have to pay for every normal day she tries to be part of! Thank you so much for being part of this journey with us!
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An update from Allie’s Mom, Angie:
Thank you everyone for your likes, shares, contributions and kind words! We feel so wrapped in love and support! Can't help but want to use this moment to share a glimpse into the life of a child with invisible illness. If you saw us at the park at 4 o'clock taking pictures, you would never know this girl was sick. We planned her day so carefully, with time to lie down and rest between hair and makeup, pictures and the actual prom. I sent them off knowing that we had done all we could to give her a fighting chance at a normal night. But her body did not cooperate, and she only had an hour and a half before she was dizzy, nauseous and hurting too much to stay upright. She was crushed. Her wonderful and ever-patient boyfriend calmed her down, brought her home and shared a pizza with her, in all their finery. It was not the storybook night she envisioned. This is not the life she envisioned. But she is the strongest, most resilient person I know, and she will be smiling soon! Thank you all for your part in giving us the chance to take away some of her daily pain. Fingers crossed that the upcoming surgery gives her back some “normal!”
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$17,834 of $24,000 goal

Raised by 136 people in 40 months
Created April 12, 2016
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SM
$10
S M
27 months ago
JM
$400
Julie Mills
27 months ago

So thankful you are home and that the surgery went well! We know you still have a long way to go and we're still praying!

$100
Anonymous
28 months ago
JM
$400
Julie Mills
28 months ago

Thankful for tenacious and experienced doctors, still praying for complete and accurate diagnosis and a plan for treatment that leads to totally recovery!!!

JM
$400
Julie Mills
28 months ago

Still praying. So thankful you are still able to be there and haven't had to come home!

SS
$50
Shellie Scates
29 months ago
YS
$50
Yvette Santiago
29 months ago
MF
$200
Meddie Finnegan
29 months ago

Mmmwwwaaa love you guys.

$50
Anonymous
29 months ago
$100
Shanda Redding
29 months ago
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