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Help First American Undergo Life Changing Surgery

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How far would you go to get your child the best medical care available?

The answer to that question is anywhere. For Emery, it will take our family from Indianapolis, IN, to London, England, on April 1st, 2023 for 6 weeks.

We are just two weeks away from Emery undergoing this life-changing surgery.

Emery Thompson was born in May 2021 with a rare physical defect known as Bladder Exstrophy. This means the bladder is open and exposed outside the abdomen. On average, the US sees around 300 cases yearly, with only one-third being females. While it was devastating to learn the diagnosis during pregnancy, we knew we were fortunate to be able to prepare for her arrival and find the best experts available.

Emery underwent her first major surgery at seven weeks old, leading to a complication that almost took her life twice. She spent the next month flat on her back in traction, with an external fixator through her pelvis and both legs in casts. She could not be held during this time nor fed with a bottle, but this miracle child fought through and amazed everyone with daily smiles and supernatural strength - something she still does daily.

A few months ago, I was surprised to come across a surgical technique called the Kelly Procedure that has been performed for more than 20 years in London. Several hospitals around the world perform a version of the Kelly procedure but most of those are different, and less successful than the exact technique performed at Great Ormond Street Hospital for Children in London.

Up until this discovery, we had been operating under the idea that the only realistic option for her future was surgery to make her "dry," meaning self-catheterize through her stomach for the rest of her life. After extensive research, it became very obvious to us that the Kelly Procedure could be the chance for Emery to have the best chance of achieving optimal bladder and kidney health and quality of life - and not have to self-catheterize. It was a huge shock to learn that this surgery is not performed by any surgeons in the US.

Emery's fantastic pediatric urologist, who specializes in her rare diagnosis, has been helping us explore the surgery and is very supportive. He is hoping to observe the Kelly procedure in person at some point in 2023 to examine the possibility of bringing the surgical technique to the United States. Emery will be the first American patient to have the surgery, and we are hopeful it will lead to advancements in the care and treatment of American bladder exstrophy patients.

On average, the surgery is performed at 12 months of age, and Emery will be just shy of 2 years old. The sooner she has the surgery, the higher the likelihood of a successful outcome - meaning eventually, she could achieve "typical continence" and lower her risk for kidney disease and other complications associated with BE. Less than 20% of US patients will ever gain "typical continence." The overwhelming majority eventually have to self-catheterize through a surgically constructed Mitrofanoff in the stomach to be "dry." The Kelly procedure has a significantly higher success rate, with closer to 70% of female patients achieving continence day and night by age 10.

The surgery requires us to travel to London for six weeks. Emery will be in-patient for up to 2 weeks after surgery and then outpatient for 4-5 more weeks while she continues to heal. She will be able to travel back to the US once her last drain is removed around the 6 or 7-week mark.

We had hoped to get insurance to cover the surgery but we have been turned down due to the simple fact that it's not in the US. The only coverage for out-of-country medical care is limited to emergency treatment experienced while traveling. Between the cost of surgery, $45,000 US dollars and the expense of airfare, lodging, and meals for 6 weeks, we are looking at $65,000. While we are disappointed for our family's sake, we have been enlightened by the fact that most insurance providers in the US don't provide sufficient coverage for patients with rare medical conditions. Emery, nor anyone else, should have to settle for a less advanced treatment plan simply because it's not in the US. Yes, we have access to great healthcare in the States - but that doesn't mean that all of the best options are available here.

Emery means "Brave & Powerful." She is the epitome of both these traits and has taught countless people incredible life lessons in her short time. Her example of bravery, strength and contagious appreciation for life are all part of the many reasons why our family will stop at nothing for her.

We are beyond grateful for any support:
1. Prayers
2. Financial
3. Raising awareness

Please consider participating in the #InsideOutForEmery challenge!

If you are nominated for the #InsideOutForEmery challenge:

Option 1: Wear your clothes inside out for one day to raise awareness; it's easy to remember that Bladder Exstrophy means the bladder is formed inside out. Post a picture of yourself with your clothes inside out on the social media platform of your choice. Be sure to include hashtag #InsideOutForEmery and nominate 3 friends to complete the challenge. Don't have social? Ask a family member or friend to post for you - another way to spread more awareness!

Option 2: Rather than wear your clothes inside out, donate $25 (or the amount of your choice) using the GoFundMe - - and nominate 3 friends to complete the challenge.

Option 3: complete both options 1 & 2.

All funds raised above the goal to cover the cost of Emery's surgery and 6 weeks of travel accommodations will be donated to Charlotte's Hope Foundation - a 501c3 that supports families new to a medical diagnosis/challenge for their child, regardless of diagnosis or prognosis, and empowers them to be the best advocate for their child:



  • Linda Cox
    • $50 
    • 1 yr
  • Anonymous
    • $10 
    • 1 yr
  • Brooke LLeonart
    • $100 
    • 1 yr
  • Anonymous
    • $20 
    • 1 yr
  • Rebecka Fee
    • $10 
    • 1 yr

Fundraising team (4)

Ashlyn Elizabeth
Westfield, IN
Stephanie Kleinbub
Team member
Darla Huff
Team member
Tamela Grabb
Team member

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