Lyra’s Journey

When Lyra was 5 years old, she was diagnosed with an autoimmune disease called Anterior Uveitis. In a nutshell, her white blood cells are attacking the colored parts of her eyes, pulling away the color, causing her pupil to enlarge, which will cause permanent blindness if not treated. We tried many rounds of eye drops before resorting to these drugs, but nothing helped. Her doctors told us then and continue to tell us now that they don’t know a cause, and Lyra has been a ‘case study’ ever since. Her uveitis is being ‘maintained and is quiet’ and has been for 7 years now with the help of methotrexate and Humira injections every other week.

Let’s fast forward to October 2025. We were at Children’s Mercy Uveitis Clinic for her 3-month check-up for her eyes and labs. Her blood has to be drawn every 3 months because of her medication to maintain uveitis. She sees an ophthalmologist and a rheumatologist. The ophthalmologist checks Lyra’s eyes, but the rheumatologist has to prescribe her medications because they say uveitis is a form of childhood arthritis. During this visit, I asked her doctor to look at her back because I noticed her shoulder blade sticking out a little bit. Her doctor looked, and she immediately ordered X-rays for her back.

We learned the next day that Lyra has severe scoliosis, and we were immediately referred to the chief orthopedic surgeon at Children’s Mercy. On November 13, we went to see the surgeon, where he told us the only way to ‘fix’ Lyra’s back was a major spinal surgery that would last 3-4 hours, and they would place 23 screws and 2 roughly 8-10” rods on either side of her spine to hold it in place. He also told us that she is pretty much done growing, and surgery is the best option.

I shared Lyra’s story with a friend, and she found a place called Scoliosis Care Center in Oklahoma City that specializes in severe scoliosis. Through research, they have designed a chair and brace that can help stabilize severe scoliosis cases like Lyra. The biggest curve in her back is roughly 60%. The Scoliosis Care Center has been able to reduce this size of curve non-surgically using their state-of-the-art equipment, braces, exercise methods, and standing MRI machine.

We have shared Lyra’s case with Dr. Matt and Starr at SCC. They truly believe they can help her using their extensive research methods. This was all great news for us to hear, especially the “your daughter does not need spinal surgery, we can help her by bracing her and training her body to move.” Such an answer to prayer to hear that something other than surgery can be done and has been proven to work. Dr. Matt also thinks Lyra’s spine, nerves, and everything that connects to it could be an underlying cause of her uveitis.

SCC has been around since 2008 and has proven results. Insurance is getting a little more open to their approaches, but they aren’t fully on board. We don’t want to put her through this major surgery at her age if we don’t absolutely have to, and because of the research SCC has done, we don’t have to.

To start the treatment, we have to go to “boot camp” in Oklahoma City. Lyra will spend Monday - Friday 9-4, stretching, testing flexibility, being fit for a special chair called a Scoliosis Flexibility Trainer that she will come home with, as well as a Silicon Valley Brace that she has to wear 24/7 for a year to a year and a half. All these things will be made specifically for her. After the 3-week boot camp, she will go home with her chair and body brace. We will be taught how to help her do all her stretches at home, use her chair, and will return every 3 months for checkups and maintenance. They believe her treatment will last 4 years, and at the end, her curves will improve and maintain their stabilization throughout her life. No surgery involved.

We are humbly asking for your assistance in helping our daughter and family in this life-changing treatment. As you read, this treatment is in Oklahoma City, and we do not live there. Travel and living costs for the 3 weeks will add up quickly. Insurance is out of network, and everything Lyra will need must be paid for before we can come home with it. The estimated cost to start this treatment and come home with the equipment is $25,200. The follow-up week-long visits every 3 months start at $4,925 and go down in price according to treatment completed. We hope to start this new treatment plan on December 29, 2025.

Thank you for reading Lyra’s story, and for praying for her and our family. Lyra is such a sweet, beautiful, God, family, and animal-loving young lady, and we know He has big plans for her.