Donate Now Request a Flight Miracle flights final facebook twitter instagram-14-32 youtube-9-32 google-plus-4-32 linkedin-4-32

Our Children's Stories

By Miracle Flights, Sep 19 2018 11:35PM

In honor of National Childhood Cancer Awareness Month, we would like to introduce you to Zakkry (Zakk). Zakk lives in North Dakota with his family. In January of 2016, at just 10-years-old and in the 5th grade, he was diagnosed with a Medulloblastoma, a cancerous tumor that starts at the base of the skull. These tumors tend to spread to other parts of the brain and to the spinal cord.

Zakk had notable regression in his fine motor skills, particularly in math and his handwriting – they were initially seen as a lack of effort. He also started to lose his coordination which was passed off as nothing because he was going through a growth phase. In December of 2015, Zakk started complaining of headaches and other symptoms. These symptoms were passed off as a sinus infection.

After several doctor visits, a CT scan that identified pressure at the base of his skull with the cause unknown, and an MRI, it was determined that a mass was resting in the 4th ventricle of his brain on his cerebellum.

"For the first several weeks, we lived in what seemed like a fog and unfortunately, that is the period, of time that doctors were meeting with us initially and explaining the details of our son's treatment plan,” said Zakk’s dad. “If we could go back, I would recommend having a friend or family member (or even a hospital social worker) sit by your side and take notes. Much of the time, we were either in tears or shock (or both) and not able to comprehend or remember most of what we were told."

In January of 2016, Dr. Joseph Petronio at Children’s Hospitals of Minnesota in St. Paul performed a surgical removal of the tumor. Days of recovery followed and, ten days later, Zakk was discharged from the hospital. At the beginning of February 2016, Zakk and his mother left North Dakota for Jacksonville, Florida. He was referred to another specialist at the University of Florida Proton Therapy Institute and began a series of 30 radiation treatments. After 3 long months of being away, Zakk was able to return home in April.

In May, Zakk embarked on the last phase of his treatment – chemotherapy where he returned to The Children’s Hospital of Minnesota in Minneapolis for a long seven months.

Zakkry received his last chemotherapy treatment in November 2016. In January of 2017, one year after his diagnosis, he had his first post-treatment scan and was officially declared: “IN REMISSION.”

"What got us through the hardest days of Zakk's cancer journey was simply having faith in God and realizing that we couldn't control the situation,” said Zakk’s dad, “but he could, and we needed to trust in His plan, even when it scared us and didn't seem fair."

"When dealing with the medical world trust your gut and stand firm on your feelings and beliefs.

"One of our doctors gave us this advice.... Accept any and all offers of help, you are no longer allowed to say, no. If you try to go it alone, you will not succeed. From our experience, our lives became busier and more expensive than we would have ever thought possible and without accepting help, we would have gone bankrupt, enduring 10 times the stress trying to care for our son through his cancer treatment, as well as providing our other children their "normal" life of school and activities.”

Zakk is now an active 8th grader with tennis in the fall, swimming in the winter, and last year he was on the golf team in the spring (though he doesn't know if he wants to do that again)!

Zakk and his parents still need to travel to Minneapolis for follow-up care and Miracle Flights is here to help. Miracle Flights has provided 5 flights to care thus far and will continue to be with him through his journey to health.

*****************************************************************************************

We are grateful to his father for sharing their story and providing advice for other families on their journey to health. To find out more about Miracle Flights and how to request a miracle flight, visit www.miracleflights.org.

By Miracle Flights, Jun 13 2018 08:40PM

By Jessie Bekker / Las Vegas Review-Journal

May 27, 2018

Socks and shoes are among the things that could have blocked Jessica Lindley’s path toward college.

For the 18-year-old Las Vegan, daily tasks such as putting on footwear require extra effort.

Still, it could’ve been worse. Had it not been for 17 surgeries by specialists outside Nevada — and help from Miracle Flights, the Las Vegas-based nonprofit that paid her way to get to those doctors — Lindley may not have been able to walk across the stage Thursday to receive her high school diploma.

This fall, the Veterans Tribute Career and Technical Academy in Las Vegas, Nevada, honors graduate will attend Oregon State University in Corvallis, Oregon, where she’ll study chemistry.

Lindley has battled the rare joint condition arthrogryposis since birth. A local doctor began fitting Lindley, at three days old, with casts to try to correct her curved joints, Jessica’s mom, Rebecca Lindley, said.

Arthrogryposis affects about 1 in 3,000, according to Seattle Children’s Hospital, where Lindley received care for several years. It can affect every joint in severe cases, and in Lindley’s case, her arms and legs.

“It makes everyday life a bit of a struggle, getting around in the able-bodied world, but I’ve managed to figure out my way around it,” said Lindley, a Vegas Golden Knights fan with dreams of becoming a 911 dispatcher.

“We like to say we have a cure for distance,” Miracle Flights CEO Mark Brown said. “We hear every day from parents who are just very grateful for the opportunity to be able to go find hope and give their child a chance.”

"If Miracle Flights wasn’t there, I wouldn’t have been able to get the medical care that I have gotten,” she said. “I wouldn’t have been able to go out of state to have all the surgeries I have had … so I don’t know if I would be as good off as I am today if it wasn’t for Miracle Flights.”

To read the complete story, visit https://www.reviewjournal.com/news/education/graduate-true-to-herself-through-battle-with-joint-condition/

By Miracle Flights, Apr 3 2018 10:00PM

I took my boys this weekend to see the highly anticipated Steven Spielberg movie, “Ready Player One”. When I watched the trailer, I was NOT so excited about watching a movie where a game is the reality to these kids. I’m trying to limit my boys’ video game playtime, not encourage a world encompassed by games.

Off we go, sodas, popcorn… all the necessities I’ll need to endure a movie like this.

And then the start.

It wasn’t long into the movie until the plot started to unravel and you began to understand WHY people in the future want to immerse themselves in lives of virtual reality. They could be anyone they want, they could go anywhere and experience anything they could imagine. They could look the way they felt inside. The Oasis was a place where anything was possible.

The movie guides us through the game and the ultimate goal to win and get control of the Oasis…

I’m following along, understanding the rules of the game, the importance of finding keys and references to pop culture of years past, and then the scene happens where Wade walks into the room and sees Samantha for the first time, in real life, NOT in the Oasis…

I literally choked on my popcorn! Did you see her face?

Samantha (aka Art3mis) has a purple port wine stain on the side of her face! She tries to hide it with her hair… and definitely hides it in her avatar she created to play in the Oasis.

I’ve seen this type of mark before. I know a young man named Jayden, who has the side of his face covered JUST LIKE SAM.

I recovered from my choking episode as I think about how awesome it is that they incorporated this MAJOR aspect of Samantha from the book into the movie.

The movie goes on… they’re playing the game, winning keys, trying to stay ahead of the bad guys…and then I cry. Full out blubbering, big fat tears cry.

Sam’s avatar changes in the BIGGEST fight scene of the movie and she includes her port wine stain birthmark on her face.

She wears it as a badge of honor.

In a pivotal shift in her character, she embraces the reality of her life, her face. This teenage girl, playing a virtual reality game in a movie… finally took the leap to not only accept herself and her differences… but, to let everyone in the perfect world of Oasis see her too. It’s such a moving gesture that the flood gates of tears and snot collectively stream down my face. I’m so proud of her in this moment.

It’s at this moment when I want to rush out in to the hallway to call Jayden, the young man I know with this exact birthmark on his face.

You see… I work for a non-profit, Miracle Flights. We provide free commercial air fare to children who need to travel out of state for medical treatment. Jayden just happens to be one of thousands of children that we’ve flown. I met him and his grandparents a few months ago and our local news did a feature story on him and his condition, Sturge-Weber Syndrome.

He shared his medical journey with viewers, how the treatment to get the wine stain lasered off his face is so very painful. But, Jayden also shared how he was bullied in school frequently and how this birthmark on his face affects how other people treat him. It’s this bullying that I know Jayden endures that fueled my tears in the movie.

Jayden is such a strong young man, with many more medical battles to fight in his future… but, I hope he watches this movie and is excited to see that there are others just like him… starring in a major movie AND winning at the game of life.

So… Steven Spielberg, thanks for incorporating Samantha’s birthmark in the movie, thanks for making me cry and thanks for changing up her avatar to show her true self. You set the example that so many people in this world need.

Young Jayden was born with Sturge-Weber Syndrome. He has traveled 6 times to New York for various surgeries and Miracle Flights has provided free commercial airfare for each flight. He inspired this article, with his positive outlook on life, his medical journey and hope for an amazing future. To find out more about Miracle Flights and how to request air travel, visit www.miracleflights.org. You can also see more about Jayden and his medical journey on this Channel 8 Miracle Moment https://youtu.be/rL49NVO_SmM

By Miracle Flights, Mar 26 2018 07:18PM

In honor of Cerebral Palsy month we highlight young Ethen who travels to Children's Rehabilitation institute in San Antonio Texas from his home in illinois every 3 months for 1-2 weeks of treatment.. He travels becuase they offer the most advanced technology for children with cerebral palsy.

Ethen uses a walker and a wheelchair to get around. He also uses a communication device and Ankle-foot orthoses (AFOs) for walking. By seeing his specialist in Texas, he continues to progress and improve with each treatment.

"They have taught us so much about how we can work with Ethen while at home. Unfortunately, there isn’t anything like this where we live, so we must fly far away for Ethen to get help. Despite the distance, we feel that traveling to Texas is what is needed to provide Ethen with the best possible medical care," says mom.

"Travel costs continue to increase and are very expensive; therefore, we are thankful organizations like Miracle Flights exist to assist families with travel to care. Miracle Flights has been a part of Ethen’s journey to independence."

Miracle Flights has flown Ethen 5 times to treatment thus far through the help and support from the Christopher & Dana Reeve Foundation - Quality of Life Grant. Thank you for being a #miraclemaker to children like Ethen!

By Miracle Flights, Mar 15 2018 08:37PM

Do you remember what it’s like to have a full-term pregnancy with no issues along the way? The belief is that you’ll be home in a few days with baby in arms. However, that reality was thrown out the door when the nurses paused, looked at my new baby and all had concerned looks on their faces.

I took a Step-Back.

There were moments of fear, stress and sadness.

I took a Step-Back.

Doctors came to our bedside and tried to explain what was happening to our child. He really was just a healthy baby boy… he just had a few airway issues. He just had a few hurdles that we needed to get through.

I took a Step-Back.

The bones in his face were causing airway blockage. There was even a point in the hospital where he stopped breathing and a nurse on duty came to the rescue just in time to stabilize him.

I took a Step-Back.

He was intubated for a while… and a trach was placed.

Que the change in music tempo now…

This is when I could choose to continue to Step-Back and let my mind be blown by all the inconceivable possibilities… or when I could choose to look at each medical intervention as a Side-Step.

The Side-Step—Is when you choose to put faith in the doctors and nurses caring for your child. When you choose to open your mind to the possibilities that there is hope for your child. That with medical interventions, he can grow to be a happy, healthy strong boy.

Tentatively, I began to Side-Step.

A g-tube is placed in my child’s stomach and attached to a feeding pump.

Again… I Side-Step… because my child can now get proper nutrition without compromising his airway.

Frequent flights are needed through the years from Texas to Seattle Children’s Hospital for surgeries and treatment.

With more urgency in my movements, I Side-Step… because there is a window of hope through organizations like Miracle Flights, that provide free commercial airfare for families traveling to receive distant medical care.

My child will need 11 surgeries before he turns 8 years old, all with the focus on improving his airway and quality of life.

I Side-Step with ease now… because I take him to the top doctors at Seattle Children’s Hospital and Miracle Flights continues to provide free airfare.

Present Day -- My son loves Star Wars and wants to be a Sith and create his own planet.

With a smile on my face, I Side-Step… he’s an amazing boy. He’s healthy, strong and doing everything little boys his age love to do. (I can’t be blamed for his love of the dark side.)

Through the years… I have learned to look at each medical issue and intervention as a Side-Step… a new way to navigate through life. I’ve become good at this dance… and I’ve found that I’m a natural Side-Stepper and I don’t use the Step-Back move as often. My grace on the dance floor becomes effortless with each day and each new encounter.

To all the parents of children with special needs--I’m sure you never thought about being a professional dancer. But… because you choose to lead with the Side-Step… you dazzle on the dancefloor of life!

My dear… you are indeed a professional dancer.

Young Sebastian was born with Treacher Collins Syndrome. He has traveled more than 12 times to Seattle Children’s Hospital for various surgeries at their Craniofacial Clinic. Miracle Flights has provided free commercial airfare for each flight. His mother inspired this article, with her positive outlook on life, their medical journey and hope for Sebastian’s future. To find out more about Miracle Flights and how to request air travel, visit www.miracleflights.org.

RSS Feed