We are SO excited to finally kick off the 20th Bert’s Big Adventure trip to Disney with a HUGE send-off celebration from the Hilton Atlanta Airport Hotel! Follow The #BBA2023 Trip!
20 years ago, Bert’s Big Adventure was created by two people. Her name isn’t on the trip, but #BBA2023 would not be what it is today without her hard work and guidance for many of our 20 years. Stacey Weiss is here to talk about what Bert’s Big Adventure means to her!
Many of our 2023 Bert’s Big Adventure families have started their own nonprofits!
Check out the Hailey Bankhead Foundation. The Hailey Bankhead Foundation is an organization founded from one mother’s love for her child facing childhood cancer and a need to find a sense of purpose and a desire to ease the pain and to serve other families facing childhood cancers.
Bringing hope, confidence and inclusion to a different world, check out nonprofit Different is Beautiful!
Braxton Dollar Foundation focuses on physically, financially, and emotionally supporting families with a child fighting cancer of any type, because no family should have to fight pediatric cancer alone.
Make sure to follow all of the magical moments as they happen with the hashtag #BBA2023, or online on Twitter, Instagram and Facebook!
MEET JAX!
It’s time to introduce you to #BBA2023 kid Jax! One thing to know about this 6 year old? He LOVES music, especially the drums! Welcome to the Bert’s Big Adventure fam!
When The Big Beyond Band heard about Jax’s wish to be a drummer, they knew they could step in and create an experience that’s JUST as epic as Jax! That’s why they’re inviting him to play in the band as we perform live in concert on March 17th on the lawn at The Avalon!
They’re also going to put his family up in a hotel for the evening so he can enjoy the entire evening, and we even got him the PERFECT rock star outfit so he’ll can fit right in with the band!
JAX’S STORY
Jax’s Mom Shelley was 25 weeks pregnant when she found out Jax had a heart defect and his aorta was backward. He was born at 37 weeks via C-section at 5 lbs 12 oz. Shelley said he was very small, and she said: “I could tell right away he was different.”
Their family pediatrician suggested Jax get tested for certain genetic issues because he didn’t resemble anyone in the family she’d seen in the past. Shelley took Jax to Emory genetics when he was 6 months old, and they did a test where they scanned his face with a cell phone and ran it through a database. After answering 50 questions, it was narrowed down to 3 things he might have. The most likely was Floating Harbor Syndrome (FHS).
During this time, he could hardly swallow because his esophagus was pulled tight from his aorta being backward. Doctors didn’t wait on surgery because he was only 13 pounds but couldn’t wait for the same reason: he was only 13 pounds because he couldn’t get nourishment. The surgery was successful.
Jax is the only known person in the world with FHS with his exact gene deletion.
Shelley said there are now about 200 people with FHS in the world and that many of them look like they could be Jax’s brothers and sisters. A few of them look identical to him.
Jax started complaining of pain in his legs, and they thought he might be imitating his grandma. Then one day, he got out of the car and couldn’t carry his backpack in to school.
This led to his diagnosis of Perthes Disease. His bone is growing on the outside of his hip, and he has surgery scheduled for March to fix it. His doctor knew about Bert’s Big Adventure and scheduled the surgery later than he normally would so Jax could go on the trip.
Jax loves to move and ride rides that he can. They’ve even snuck him onto rides before because he is so small.
Shelley was diagnosed with thyroid cancer last year. She had 3 surgeries and 2 radioactive iodine treatments where she was completely isolated from her family. After a long rough year, she saw a post on a CHOA kid at heart page mentioning there was one week left to apply to BBA. She’s a longtime listener of The Bert Show, so she knew what it was and didn’t think Jax would get picked. She applied on the last day to submit applications.
MEET TOAN!
Meet Bert’s Big Adventure kid Toan! His mom and dad say it was “divine intervention” that brought Toan into their lives. They’ll share their story.
#BBA2023 kid Toan’s favorite TV show happens to be Netflix hit #FloorIsLava…and we HAPPEN to know that the team at Crisp Video Group has someone who wants to give him a big shout out and a Floor Is Lava party! Big thanks to Crisp Video Group for making this possible!
TOAN’S STORY:
Toan was adopted by his family at age 3.5 from Vietnam. His parents Stacey and Brandon had a long-term plan to adopt internationally. Stacey went on the “Waiting Child” list and saw Toan. Even though Brandon had just returned from deployment with the Army, they both agreed Toan was their son.
The family felt throughout the adoption process that Toan was meant to be a part of their family. The adoption process took 1.5+ years. During that time, they only received 2 updates on his status, so the family leaned on trust and faith. They felt that they were living in a time that they would later categorize as divine intervention. They felt so grateful to know it at the moment versus looking back and seeing higher powers at play.
Typically, a baby with arthrogryposis is casted the day that they are born, so Toan was extremely behind when he arrived in the U.S. at 3.5.
Stacey and Brandon found a doctor in Florida that was willing to attempt an intervention on Toan’s condition so Stacey and Toan flew to Florida to have his casts put on. When their plane landed back in Atlanta, she turned her phone on to 30 missed calls informing her that the world was shutting down due to COVID. So, for six months, Stacey and Toan drove back and forth to Florida. They made the 11-hour (22 roundtrips) drive a total of 26 times.
Toan had 4 rounds of surgeries over the course of those 6 months. Doctors had to go in and surgically break his bones to reset them. He had roughly 40 broken bones and Stacey had to push against the bones 3 times a day in addition to a 1-hour session in the clinic 6 times a week.
Unfortunately, despite Toan enduring one of the most painful courses of treatments, in July 2022, the hardware moved, and the rods in his thighs migrated and locked his legs again. So Toan is back in his wheelchair 100% of the time, but the family is at peace.
Bert’s Big Adventure Kid Jennifer From 2007 Is Back With A Special Surprise!
Kiddo Jennifer from 2007 Bert’s Big Adventure trip has a gift she would like to give Bert for the 20th Anniversary. This gift is remarkable as is she is.
How Well Do We Know Our Way Around Disney?!
Do you know your way around Disney? Kristin is ready to put all of us to the test!
BIG thanks to The Island Resort at Fort Walton Beach who have donated trips for some of our #BBA2023 families! Thanks for helping us make these families feel so special.
MEET LAYLA!
It’s time to meet Bert’s Big Adventure kid Layla and her family! Just when mom and dad thought having a kid wouldn’t be an option, LAYLA came into their lives. Hear their amazing story of adoption.
When our friends at Zaxby’s heard Layla’s story and their long road to recovery, they wanted to do something to enrich their lives and bring joy to the family! That’s why they’re giving ALL of the girls a VIP trip to see Layla’s favorite artist, Luke Bryan!
Zaxby’s is generously paying for the family’s airfare, hotels, food, and everything they need to make it the perfect girls’ weekend.
LAYLA’S STORY:
When Layla’s Mom Tasha had an emergency hysterectomy, Dad Nathan told her he was open to adoption as she went into surgery. They started looking into agencies during her recovery and decided to adopt from China because they allowed people to take their adopted child with them on their first visit to the country.
The adoption agency gave them a checklist to pick traits they would like to see in their future kiddo. Tasha and Nathan agreed that if this was a child they conceived together, they would not put limitations on keeping the baby, so they checked every box on the list. They opened the file with Layla’s picture, and knew she was meant to be their daughter—regardless of her story—so they began the process of trying to match with her.
From the beginning of the adoption process to when they traveled to China to get Layla, it was about a year. Layla had just turned one when they flew over to bring her home.
Two hours after landing, the orphanage director handed Layla to Tasha and Nathan with just the clothes on her back. No bottle. No shoes. She had never been fed anything other than rice. They signed the papers, and she was theirs just like that. CHOA doctors said they were shocked she was able to walk after having her back open for 8 weeks.
They eventually learned that Layla needed a catheter at home. Spina bifida led to her having no feeling in her bladder or bowels so she didn’t know when to go. When she was 4 years old, she had a 14-hour surgery where her urologist used her appendix to create a channel from her bladder to her belly button. Then he put a port in to empty her bowels and closed off the normal passageways of the bladder and bowels.
Layla catheterizes herself every 3 hours through her belly button and hooks up an IV bag to her port to flush her bowels out every night. She has surgery once a year to change out the ports, and checkups at CHOA every 6 months.
Tasha also has breast cancer. She underwent a double mastectomy last May and had a second surgery in November. Layla started doing the catheter herself during this time.
2022 BBA kiddo Rue goes to the school Tasha teaches at. They connected with 2019 BBA kid Abby Johnson’s mom on Spina Bifida social media groups. They learned about BBA from a pediatrician they’ve been going to forever. One of the nurses supports BBA and told them they would be perfect for it so they applied!
MEET AVA & ANNABELLE
It’s time to meet one family with TWO Bert’s Big Adventure kids! Introducing sisters and best friends Ava & Annabelle!
They’ve also partnered up with local contractor, Ron Swansey at Swansey Contracting. Ron has agreed to provide his renovation services and make the money stretch!
AVA’S STORY:
Ava was born 100% blind. The best eye doctors have said that there is no surgery that can be done to restore any of her sight. Ava had her first bone fracture at just 2 years old. After many years of doctors and hospital visits, she was finally diagnosed with osteoporosis pseudoglioma when she was 7 years old.
Even just getting around her home is a massive struggle because she cannot see and has extremely fragile bones. If there is a therapy, Ava has done it. There have been more doctors and surgeries than her, Jason, and Brittney can count.
She has rods in her legs as a preventative measure to give her femurs added support. Additionally, she has Infusions every 3-4 months. She is unable to build up bone strength, but the hope is to prevent declines in her health. She also has X-rays every 3-4 months to perfect a medical history.
Despite everything, they describe Ava is the happiest kid in the world.
ANNABELLE’S STORY:
Even though she is younger, Annabelle is often the big sister to Ava. She enjoys helping her to brush her teeth and do basics around the house. The sisters are best friends and they like to do everything together – especially playing make believe and enjoying movies. They always go to each other’s doctor’s appointments, so the other doesn’t go through it alone.
Annabelle has said that if she won a million dollars, she would fix up houses for people in wheelchairs so they could get around their homes easier. She has been diagnosed with Russell-Silver Syndrome, Glycogen Storage Disease of the Liver, Dysphagia, and Reactive Airway.
Jason and Brittney are open books about the girls’ stories and feel blessed to have them: “Our girls are our favorite teachers. They can go through everything they have and still be happy and blessed with what they have, and they’ve taught us to take a step back and make sure we’re the same way. If they can do it, why can’t everyone do it? It shines a light on what God can do for everybody.”
MEET GREYSON AKA “DUCKIE”!
Meet 7-year old Greyson AKA DUCKIE! Duckie and his family might not have even been on Bert’s Big Adventure had it not been for apartment hunting! We’ll explain…
Our friends at Rule One Investing heard that Duckie is a BIG Go-Cart enthusiast so they decided to partner up with RBM of Alpharetta and K1 Speed Indoor Karting to make sure he gets to enjoy his need for speed!
RBM of Alpharetta, Rule One Investing and K1 Speed have a surprise for Duckie. He’s getting a brand new K1 Speed racing uniform to ride in style at K1 Speed, Duckie’s favorite kart racing facility that is donating an Adrenaline Pass, which includes a 1-year membership and up to 25 races for free! Plus indoor racing gloves, t-shirts and a trucker hat!
AND last but not least…a new GoCart you can use at home, along with a helmet of course! Safety first 🙂
Big thanks to Rule One for providing our family with a one of a kind VIP race-car experience for Duckie and his whole family on a pro racetrack in Rule One’s official race car and driver!
DUCKIE’S STORY:
In September 2014 – after months of failed pregnancy tests amidst being sick – Nikki finally went to the ER and found out she was five months pregnant. In October 2014, she found out her unborn child had hypoplastic left heart syndrome.
Before she was due, doctors had a meeting with Nikki where she was given the various odds and percentages and told what to expect. If he were to survive birth, there would be a series of open-heart surgeries. If he survived that, there would be a series of complications. If he survived that, she was told his heart will eventually fail down the road. He’d eventually need a heart transplant, and that would add 10 or so years. Nikki was even given the option to terminate the pregnancy, and she chose not to.
In December 2014, Greyson was born. Right after he was born, doctors found a brain bleed with signs of a stroke.
Greyson having hypoplastic left heart syndrome meant he had half a working heart, and treatment included a series of 3 open heart surgeries. 13 days after being born, he had his 1st surgery with a 75% chance of survival. Five months later, he had his 2nd open heart surgery.
When Greyson was removed from a respirator for the first-time weeks after being born, his crying sounded more like quacking. Nikki said he was her little Duckie, and the name has stuck ever since. He grew to love and embrace the nickname.
Nikki reads science journals at night and found a lab that stores stem cells. She shared Duckie’s story with them and her hopes that stem cells could someday fix his heart, and they agreed to store his stem cells for 20 years for free. Then she found a doctor in Atlanta trying to come up with a way to use stem cells to grow the other half of his heart and decided to move here.
Soon after Nikki and Duckie moved to Atlanta, she was apartment-hunting on Craigslist. She found one from a woman named Michelle, and they moved in. It ended up being 2012 BBA kiddo Marie Suprenant’s mom, and they were the first ones to introduce them to Bert’s Big Adventure.
Nurse Cathy lives 4 houses down from the childhood home Nikki grew up in in Florida. They met her and made the Atlanta/BBA connection. Nikki mentioned they had applied before but didn’t get selected. Cathy nudged them to apply again, and here they are.
MEET KORBIN!
This kid is gonna fit right into the Bert’s Big Adventure fam! He loves pranking people and even fake poo! We’ll introduce you to 9 year old Korbin!
When the team at The Justin Landis Group heard about Korbin and his family, they knew we had to step in and help. That’s why the Justin Landis Group is covering their payments for the entire year! Check what’s in the big box…
KORBIN’S STORY:
Korbin returned home on a Sunday from a weekend at his dad’s and could barely walk because he said that his “feet hurt.” Alicia took his shoes off and both of his feet were swollen.
That night, Alicia took him to urgent care, and they couldn’t find anything wrong and recommended that he go to an orthopedic. The next morning, they traveled to Athens and there his left foot was put into a boot, and they were told to treat his right foot as a sprain.
Later that week, they went to a different orthopedic later and his right foot was put into a cast. Two weeks later they returned to have his cast removed and they discovered that his feet were still swollen, so the doctor suspected a bone infection and sent the family to get blood work. At that time, the treating physician was like okay these results could mean XY or Z or leukemia, but we know that’s not the case.
The orthopedist recommended an MRI to confirm the suspected bone infection. About a month later – on September 22nd, they found an opening for an MRI in Kennesaw. They took him back and Alicia was witnessing whispering between the staff, and she knew that something was wrong. The doctor then called to tell Alicia that the radiologist suspected that he had leukemia and that they needed to go straight to Scottish Rite.
Multiple doctors at Scottish Rite were telling Alicia that they didn’t think Korbin had leukemia because he didn’t “fit the script,” but asked that they spend the night for additional testing. When she got off the elevator, she saw the signage for “cancer” and “everything sank into me.”
The next morning while Korbin was having additional testing, another orthopedic doctor came in and said I’m sure it’s XYZ and we’ll just treat it with Tylenol, and he’ll go home today.
At 7:56 p.m., another doctor walked through the door and told Alicia, I’m sorry, but the results came back positive. She just kept hearing I’m sorry and blah, blah, blah, but she was trying to hold it together and not cry in front of Korbin.
The next morning Korbin got his port or as they call it, his “Hulk Button.” In April, the family had a setback. Korbin had a painful spot on his leg, but they were unable to biopsy it. He had a feeding tube put in place. He was having a hard time waking up. Korbin wasn’t responding to anything they were doing, so chemo was stopped. Turns out he had a fungal infection in his lung and that was causing his health to decline.
This was all the week of Kiara’s high school graduation. Korbin was able to watch via FaceTime. Alicia was walking to the car leaving Kiara’s graduation and she received a call saying they were moving Korbin to ICU. She was so heartbroken and torn – she wanted to give Kiara her moment but also be there for Korbin. He stayed at CHOA for a total of 53 days. He is still on the fungal medication because the infection is ongoing. He has also been suffering both mini and full seizures as a result of neurotoxicity.
Bert’s Big Adventure Kid Charlie Is Back To Have A Drink With Bert!
Bert’s Big Adventure kid Charlie from the VERY first BBA trip is of age and has a dream to be on the radio and have a beer with Bert! In honor of the 20th anniversary of Bert’s Big Adventure we’re gonna make that happen!
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Also, check out these Bert’s Big Adventure accounts for more!
And finally…if you have $5, will you donate to help Bert’s Big Adventure out so we can keep making magical moments for these kids? That’s all it takes – EVERY dollar adds up and helps more than you know!
Just text “BERT” to 50155 or you can donate here (we love you for it)!