This week I was a reporter again for a bit and put together this story about a great kid in my children’s church group who is in need of life-changing specialized surgery. It ran in the Tuttle Times newspaper on Sept. 17, 2020. This is the article in its entirety as submitted to the newspaper.
Jonas, we’ve got your back!
Local boy needing specialized surgery finds support in the Tuttle community
By Regina Garvie
A Tuttle boy is in need of life-changing surgery – and his friends and family are stepping up to help make that surgery a reality.
Jonas Lee turned twelve last week, but he was only five months old when he was diagnosed with Progressive Infantile Scoliosis Disorder. And over the years, the condition hasn’t gotten better with treatment. It’s worsened.
In 74-94 percent of scoliosis cases diagnosed in infancy, the disorder resolves itself as the child grows. However, cases that don’t resolve on their own quickly become debilitating, pushing on vital organs and causing complications like asthma, irritable bowel syndrome, and other issues.
“It also changes the way the ribs and chest cavity are formed because of the immense stress caused by the spine,” said Jonas’ mother, Hollie Lee. “Infantile scoliosis accounts for less than one percent of all idiopathic scoliosis cases. It is even more rare for it to be progressive.”
Jonas’ scoliosis also deviates from the norm because most cases curve to the left, but not his. It curves to the right.
Jonas began his proper treatment journey with tethered spinal cord surgery by a neurosurgeon at OU Children’s Medical Center when he was 20 months old. Before that, his parents had taken him to multiple orthopedic specialists and pediatricians who all told them to “wait and see,” which they later learned was the worst thing to do with a progressive scoliosis case.
After Jonas recovered from that first spinal cord surgery, he was put into a trunk cast that was changed every six to eight weeks in the operating room.
“Once that orthopedic doctor decided he was ready to put Jonas in a brace instead of a cast, we knew we needed to find a more experienced doctor,” Lee said. “Time is of the essence and his back was not going to fix itself. We were determined to seek the best non-surgical treatment available for him.”
That decision led the family to Shriners Hospitals for Children in Salt Lake City, Utah. From then on, the family traveled to the Salt Lake area multiple times each year for new casts and eventually bracing. In 2017, Jonas’ doctor retired, and he began seeing an orthopedic specialist in Philadelphia, Penn. at Shriners Hospitals for Children, and the Lee family began looking at different options.
“We began preparing our hearts and minds for a new procedure called Vertebral Body Tethering, or VBT,” Lee said. “VBT is a fusionless surgery that preserves the patient’s mobility. At our normal checkup this July – which was delayed two months per Covid – Jonas’ back had progressed while using his brace 23 hours a day. It had gone from around 60 degrees last summer to 76 degrees.”
Because of the dramatic increase in curvature, Jonas is no longer within the parameters for the Shriners Hospital to perform VBT. But instead of giving up hope, his family refocused on another surgery, Anterior Scoliosis Correction (ASC). ASC is very similar to the VBT surgery, with one main difference. With ASC, the doctors will be able to correct all of the rotation in Jonas’ spine while in the operating room.
“The rotation is really what causes scoliosis to progress,” said Lee. “It is very much a 3-D condition, which is mind-boggling when you think about a curvy and twisted spine. There are only a handful of doctors in the entire world trained in ASC.”
Because Jonas’ curve is so large and rotated, there are even fewer doctors that will perform the surgery on him. But a group of doctors in New Jersey have a private practice where they specialize in ASC and train other doctors in their technique. They also regularly publish medical journals on ASC.
According to the doctors’ website, spineandscoliosis.com, in the ASC surgery titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis and a rod-cord is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.
And time is of the essence. “It is very important that Jonas has his surgery sooner than later. With each day, his back continues to curve more and more,” Lee said. “He is very tall and thin so it is hard to see his deformity through his shirt and his brace. When he is not in his brace he is in a great amount of pain. Partly bone pain, but mostly muscle pain. His muscles have never really had to hold his trunk up; that has always been the brace’s job.”
Lee said that they have good medical insurance that will cover the hospital stay and the anesthesiologist, but because the doctors are considered out-of-network and in a private practice, there is no “write off” of fees once the insurance decides how much they will cover.
“A deposit of $35,000 is required up front for the surgeon fees,” she said. “We also had to sign a promissory note stating that no matter what the insurance ends up covering, we will be responsible for whatever amount is remaining and will pay it within four months of the surgery date.”
Despite the huge expense, the Lees have moved forward, and Jonas now has a surgery date of Oct. 14. Due to Covid, they are required to drive there instead of fly, which will be about a 22 hour drive. They will also have to quarantine for two weeks prior to surgery.
Although he has been in treatment for his spine since he was a toddler, Jonas has always been as active as possible. His mother describes him as “an old soul” who loves fishing, music, playing the drums, playing his violin/fiddle, kayaking, water sports, hunting, and camping.
“He’s very adventurous,” she said. “Even when he was a baby he would scream if I brought him inside from being out on the back porch.”
Jonas has been homeschooled since the middle of first grade and started Epic Charter Schools last August.
“Epic has been a perfect fit, because he is still able to go on camping adventures and do his schoolwork,” Lee said.
Jonas is also the pitcher and team captain on his baseball team, wearing his back brace while he plays baseball but hiding it under his jersey. His team won first place in the Canadian Valley Baseball Association in 2017.
Lee also describes her oldest son as very humble. “He would never tell you that he could play “TNT” by ACDC on the drumset at two years old,” she said. “He has always been able to keep perfect time with music.” The Lees are both drummers, so they recognized Jonas’ talent early on. He is now involved with the Oklahoma Homeschool Bands in Oklahoma City, where he plays percussion in band and violin in orchestra.
The Lees have lived in Tuttle for 10 years, after moving here when Jonas was a baby so he could grow up in a small town with a close-knit community like his parents did. “We wanted a home where we could let our kids ride their bikes around the block and grow a big garden,” Lee said. Jonas attended Tuttle Schools for several years before switching to homeschool. He also was involved with Cub Scouts for a time before deciding to focus on baseball. The family attends church at True Oak Fellowship.
Jonas’ dad, Jason Lee says their faith in God has helped them through many trials over the years.
“God has a way of revealing Himself to you in challenging life experiences if you lean on Him and trust Him,” Jason Lee said. “I am confident that in and through Christ is the only way we’ve all gotten through this. We only need to look back and see what God has done for us to know and have confidence in what He will continue to do in Jonas’ life, and the further back you look the farther ahead you can see. Don’t get me wrong, it wasn’t always super difficult. In fact, we have adjusted to a level of normalcy with the brace. But I can remember our church family laying hands on our baby and miraculous surgeries. We could really write a book full of testimonies.”
In addition to walking by faith, the family, including the couple’s other son, eight-year-old Jude, have found solace in the outdoors. “Jason has always fished and hunted and Jonas really enjoys it, so we spend a lot of time camping and just enjoying God’s creation,” Hollie Lee said.
Jude has a different, unrelated rare bone disease, Legg Calve’ Perthes Disease, but both he and Jonas continue to stay active even with their physical issues. However, what they can do is limited. Hollie Lee is looking forward to how the ASC surgery will improve Jonas’ life.
“Jonas has never been allowed to play on skateboards, trampolines, pogo sticks, or anything that causes compression to his spine. Since he has to wear his brace 23 hours a day, he can’t just go jump in the water when it is hot outside,” she said. “The brace straps in the back so he has to have help getting it off and on properly. With him being 12 now, he’s pretty tired of his mom or dad having to help him with it every morning or night.” Jonas wears a different, more aggressive brace while he sleeps. The night brace isn’t designed to wear while standing because of its rigidity. “Jonas is incredibly excited about the idea of not wearing a brace,” Lee said. “The few times he had been allowed by his doctor to sleep without it, he has gotten much better rest.”
Currently the Lees’ fundraising goal is the $35,000 deposit amount for the surgeons. So far, the family has raised around $15,000 through donations on their GoFundMe page, personal checks in the mail, and other means.
The Lees’ church family is also determined to help the Lees make their hopes for Jonas’ health come true. They will be hosting an Indian Taco and Silent Auction Fundraiser this Sunday, Sept. 20 from 11 a.m. until 2 p.m.
Church volunteer Patti Lamle said that there will be multiple ways on Sunday that the community can show their support for the Lee family.
“We will be selling Indian Tacos for $10 each,” Lamle said. “People can drive through to pick up or dine in.” There will also be raffle prizes, silent auction items, and t-shirts for sale, and all proceeds will go towards Jonas’ surgery.
Lamle said that the church hopes God will bless their efforts and provide enough funds to help the family.
“The Lee family is a treasure,” she said. “They serve the Lord with their whole heart. They are a true asset to our community, church, and their friends and family.”
Hollie Lee said that she was grateful for the love being shown by the church and community.
“We are consistently blown away by the support we have from our church family at True Oak Fellowship,” she said. “Our motto is ‘Love God, Love People, Be a Servant’ and our church family has had Jonas’ back since the beginning of this journey. Love, support, and the Holy Spirit is oozing out of the walls at True Oak. I know that probably sounds cheesy, but that is the best way to describe it! Jonas is a bit embarrassed by all of the attention, but he knows it is out of love. He is extremely thankful.”
To help with Jonas’ life-changing surgery, True Oak will be open for the fundraiser this Sunday, Sept. 20 at 20 Worley Creek Drive, 11 a.m. to 2 p.m. Those who cannot attend or would like to give directly can send donations to the family’s GoFundMe page at https://www.gofundme.com/f/jonas-we039ve-got-your-back or by sending Paypal donations directly to the Lees at firstname.lastname@example.org.
We’ve Got Your Back, Jonas! Fundraiser for Jonas Lee
$10 Indian Tacos, Silent Auction, Raffle, T-Shirts
Sunday, Sept. 20, 11 a.m. – 2 p.m.
Drive-through or Dine-in
True Oak Fellowship, 20 Worley Creek Drive, Tuttle
Or donate directly
GoFundMe: at https://www.gofundme.com/f/jonas-we039ve-got-your-back
PHOTO CUTLINE: The family of twelve-year-old Jonas Lee (right) is raising $35,000 so he can have the life changing surgery he needs. His parents, Jason and Hollie Lee, and younger brother, Jude, along with Jonas, will all be at True Oak Fellowship in Tuttle this Sunday for an Indian Taco and Silent Auction Fundraiser to help them reach their goal. Jonas was diagnosed with an extremely rare form of scoliosis as a baby and now needs specialized surgery to help him live life to the fullest.
PHOTO CUTLINE: Jonas Lee’s spine now has a 76 degree curve. Without life-changing surgery the curve will continue to worsen as time passes. Jonas’ type and degree of scoliosis is extremely rare. A curve of 10 degrees is present in about three percent of the nation’s population. A curve of 30 degrees is present in about 0.3 percent.