Walking Into Hope: Summer's SDR Surgery

Meet Our Rae Of Sunshine

Summer Rae is silly, strong, smiley, stubborn, smart, sensitive, and oh-so-very sweet. These are just a few words that describe Summer. Her radiant smile and infectious laugh will brighten your day every single day!

At 3 years old, she's a typical toddler who adores her big sisters, reading books, coloring, and snuggling. After being practically raised at the ballfield, she can play softball like the best little sis there is because her two big sisters love the sport dearly. Alongside all of her wonderful qualities, Summer also happens to have Cerebral Palsy (CP), which she will live with for the rest of her life.

When Summer was diagnosed with Cerebral Palsy, our world changed—but not in the ways you might think. Yes, it's been a journey full of challenges, but it’s also been one filled with love, growth, and a deep determination to fight for her future.

About Cerebral Palsy

Cerebral palsy is the most common motor disability in childhood, caused by abnormal brain development or damage that affects muscle control, movement, and posture. Cerebral means having to do with the brain. Palsy means weakness in or problems with using the muscles. While CP doesn't worsen over time, its effects—like spasticity, causing constant muscle contractions—can significantly impact mobility, cause pain, and lead to long-term complications. Summer has Spastic Triplegia, a form of CP that affects both legs and her left arm. Adding to her uniqueness, Summer also has sensorineural hearing loss in both ears and proudly wears hearing aids she personalizes with charms each day.

Over the past two years, Summer has spent countless hours on physical therapy, occupational therapy, feeding therapy, and speech therapy. She has visited numerous medical professionals, both locally and in Tennesee, and has undergone various hospital tests—all with remarkable resilience and often a smile on her face. She's been fitted for two different sets of orthotics (AFOs and SMOs) to support her mobility but still has painful night-time muscle spasms several times a month due to her spasticity. Despite all these efforts, she often falls and faces daily challenges with balance and coordination. She walks with her left leg turned inward and sometimes on her toes. Activities like running, jumping, and climbing are slow and challenging for her, requiring extra effort and determination. She tries her absolute best to keep up with her big sisters and friends around her but still tires easily. Even so, we are incredibly proud of her determination and the light she brings to every moment!

About SDR Surgery

Selective Dorsal Rhizotomy (SDR) is a complex surgical procedure and is the only surgery to permanently reduce lower extremity spasticity (muscle tightness) in some children with CP. Early surgery is important to prevent further neurological deterioration. While there is no age limit for those that can receive this surgery, multiple doctors have shared that children between the ages of 3-6 seem to benefit the most. After reading numerous stories and blogs on families who went through the SDR surgery for their child, one common theme stood out, and that was "we wish we would have done it sooner.” Summer will have this surgery sometime before her 4th birthday.

How does SDR work?

A reflex in the spinal cord controls muscle tone, causing muscles to contract when sensory nerves send information to the spinal cord, and motor nerves send it back to the muscles. In Cerebral Palsy, control over these reflexes is reduced, causing continuous muscle contractions (spasticity).

Dr. Naftel, a pediatric neurosurgeon at Vanderbilt, will make an incision in Summer's back to access the lower spine. Next, he creates a small “window” (called a laminectomy) in the bone of her spine. He will then meticulously test by using a technology called electromyography (EMG) to stimulate each sensory nerve rootlet, one at a time. The surgical team will see how the muscles of the legs respond to the stimulation and then cut certain sensory nerve “rootlets” in the spinal cord that are causing muscle tightness in her legs. The incision is then closed with dissolvable sutures. This 3-5 hour long procedure allows muscles to work more normally, improving mobility and preventing muscle contractures, and joint and bone deformities that can develop from prolonged spasticity. After SDR surgery, Summer will have intensive physical therapy 5 days a week for 6 months, and then continue with outpatient therapy 1-3 times a week for up to 3 years. This is essential to help her permanently improve her muscle strength and control, range of motion, posture, and gait mechanics.

Why We Need Your Help

Deciding to pursue SDR wasn’t easy. We were terrified, constantly wondering if it was necessary since Summer has "mild CP" and is "making progress." The thought of surgery, especially one that involves cutting into our baby’s spine, was something we never thought we’d have to face as parents.

But as we dove deeper - speaking with other families, and watching countless videos on YouTube of other stories of children and adults with CP - our perspective began to shift. (Knowing how introverted and private we typically are, you know this was a big deal for us to reach out to others!!). We learned how children like Summer, who were mobile in the early years, often faced rapid growth that caused permanent mobility issues by age 5 or 6. While Summer's frequent falls might seem typical for a toddler, the thought of her living with pain and instability as she grows older is a reality we cannot ignore.

After an intensive, multi-disciplinary SDR evaluation in Fall 2024, we decided to trust the doctors' advice and move forward with surgery in 2025. The message from the experts—and countless families who've been in our shoes—was clear: the sooner, the better. Acting now not only gives Summer the best chance to avoid long-term mobility issues but also reduces the likelihood of additional orthopedic surgeries down the road. This is not an easy path, but it's one we’re taking with our eyes on the future: a future where Summer has the best possible chance to move freely, without unnecessary pain, and to live the fullest life she deserves.

How You Can Help

As Summer's parents, we think she is perfect just the way she is—but we want to make her daily life a little easier! While health insurance will cover a portion of the costs, we're facing out-of-pocket expenses for her surgery and therapy in 2025 that are expected to total around $50,000.

Every contribution, big or small, brings us closer to giving Summer the life she deserves. I believe in the kindness of others, and I know that together, we can make an incredible difference.

Thank you for reading our story and for joining us on this journey. From the bottom of my heart, thank you for being part of our village.

With love and gratitude,

The Monarchs