Hello, my name is Jes. I’m a proud mom of my two beautiful children Constantine(8) and Willow(3).
I’m writing with a full heart today as we begin our fundraising journey to raise the money needed for a life-changing service dog. A little about our sweet girl Willow, she was only four months old when she began having seizures. That led to her diagnosis of Tuberous Sclerosis Complex (TSC) a rare genetic disorder that can cause growths of non-cancerous tumors as well as seizures, developmental delays, and lifelong medical needs. After her diagnosis, for the next 2 years Willow was in and out of the hospital due to her seizures. During this time, I was diagnosed with Breast Cancer at age 35. There is no rulebook for fighting cancer while your baby is also fighting. I was losing my hair and my strength at the same time Willow was slowly losing pieces of the little girl she used to be. Willow went seizure free for over 6 months, and we thought she may be growing out of it. Hoping it was just infantile seizures.
Then came the night of October 12, 2025. I woke at 4am to the sound of rhythmic banging from Willow’s crib and found her in the middle of a severe seizure. That night changed everything. She was rushed to the hospital, immediately intubated and life flighted to PICU. Once we got there, she continued having seizures even while heavily medicated. Her heart was giving out and there were times we thought we may lose her. We were running out of options. The doctors considered putting her into a medically induced coma to try to stop her seizing and let her brain rest. Thankfully it didn't have to get to that point. Her hospital stay was long and painful, and the fear was constant and overwhelming. Finally, by the grace of God her seizures stopped but our poor baby laid there for weeks intubated and highly medicated. When she was finally extubated, that’s when we began to understand just how deeply the seizure had damaged her brain. She had no control over her movements, her arms would flail so wildly that her hands kept getting tangled in her hair, causing her to pull it out, she couldn’t sit up on her own, she had no awareness of her body, she was completely nonverbal, there were no signs of the emotions we used to see in her: no smiles, no frustration, no spark.
At first, we clung to the hope that what we were seeing was the brutal aftermath of her withdrawal from the high doses of benzos and opioids. But when those symptoms finally faded, we were left staring at a truth that shattered us, our little girl I put to bed on the evening of October 12th was gone. Our vibrant three-year-old had been pulled all the way back to infancy. We spent weeks praying and searching for any sign that our daughter was still in there. Day after day we watched her closely, holding on to the smallest movements, the faintest expressions, anything that might tell us she was still with us. After the third week, we finally saw a glimmer of her again, and for the first time in a long time, hope felt real.
We were transferred to an inpatient Children’s rehab. We were still trying to understand the full extent of Willow’s brain damage. Every therapy session felt both hopeful and heartbreaking as we learned what her road ahead might look like. The therapists were gentle and honest with us about how much work it would take, and we often found ourselves wondering if we would ever be able to get our little girl back to the baseline she once had. For 43 days we lived there, trying everything we could but Willow just wasn't ready yet. When it became clear she wasn’t progressing as quickly as the team had hoped, we made the decision to bring her home and do outpatient therapy instead. We believed that being in her own familiar space, surrounded by the love and comfort of home, would help her. And we were right! It has been eight and a half months, and she is now crawling, pulling to stand, furniture walking, playing with toys, laughing, and making eye contact again. But nothing could've prepared me for the moment when I heard my baby say “momma” again!
In that single word, it felt like a piece of her had finally found its way back to us!
Willow has shown us just how resilient, courageous, determined, and unbreakable she is, but it has also made us realize how much more she still needs in order to fully reclaim her independence and safety. Having a service dog would be truly life-changing, and in many ways, life-saving. These amazing dogs are trained to recognize when a seizure is happening or about to happen. They can bark to alert us the moment something is wrong, stay right by her side to keep her safer, and offer comfort when it’s over. This dog will also serve as a guide for her mobility, helping her as she continues to grow stronger, and will support her through every stage of her therapy. Giving our little girl that constant watchful presence could mean the difference between a seizure being caught in time and one that goes unnoticed. It would give Willow a loyal companion and guardian who is always ready to protect her and walk beside her as she heals. For our family, it would bring a kind of peace we have not known in a very long time, the relief of knowing she is never truly alone.
Whether you are able to help through a donation, by sharing our story, or with a prayer, it would mean more to our family than we can put into words. Your kindness has the power to bring Willow the protection she so deeply needs and the peace of mind our family has been longing for. Thank you for taking the time to read our story and for holding Willow in your hearts.
With all our love and gratitude, Jes, Kurt, Constantine & Willow