Shiloh and Sara were first introduced via a wonderful social media based national children’s stroke and hemiplegia organization and then became fast friends in person. We realized that in each other we had found another scared and determined mama, just minutes up the road. We quickly came to realize that both of us had the same exact feelings; As common as pediatric stroke is, particularly in a major metropolitan area, access to resources in the Kansas City region proved extremely difficult to navigate, despite having backgrounds in healthcare and childhood development. Meaning, we KNEW how and where to find resources and it was STILL not easy, particularly when you are trying to care for a child that is requiring a bit more attention than the typical child. We had to call in favors, hound, and scrap.

We wondered, “What is the parent with zero developmental or medical background supposed to do? Where do they turn?” Our quest to help other stroke parents and children has been a constant labor of love. When we went to find resources in Kansas City we discovered that there were so many wonderful options, but many were a bit difficult to find. Further complicating the situation, utilizing insurance and finding contact information could prove difficult.

We still have difficulty with timely care appointments, but that is due to lack of specialist resources, not complete unavailability. Something had to be done to give parents in the Midwest hope for their children and make their paths slightly easier to navigate than ours have been. We both operate on the idea of, “If not us then who, and if not now then when.” It has been wonderful to meet other people walking a similar path to our own and know that we can all help ease each other’s burdens and frustrations. All while loving our children and watching them achieve things that many times their exam findings were indicative that they would be unable to do.

Stroke survivors are not defined by their diagnosis, and can prove to do unbelievable things if they have a timely diagnosis, fast access to care and are surrounded by people who love them and want them to succeed. We are determined to be those people, for both our own children and for others. We are beyond grateful for all of you who have taken interest in our foundation, and loved both our children and children you’ve never met like your own through volunteering, support and donations. Thank you from the bottom of our hearts.

– Sara and Shiloh

Jace’s Story

Our son, Jace, was born on April 29, 2012. He was born premature via emergency c-section due to fetal distress at Shawnee Mission Hospital. When Jace was born he had to be bagged and taken straight to the NICU. Approximately 12 hours after he was born Jace began having apnea episodes. When these would occur, Jace would stop breathing and need physical stimulation to start again. After several tests, the hospital decided it was best that he be transferred to Children’s Mercy Hospital for further testing. Jace was nearly two days old at this time.

The day after Jace’s arrival the doctors had run numerous tests, including a head MRI. The neonatologist sat my husband and I down and told us that our baby had suffered a significant stroke prior to his birth. His right carotid artery and right subclavian artery were completely blocked. They estimated that it had occurred roughly one week before birth, based upon seeing the new pathways that had already formed around the clots.

The doctors then explained that Jace was at high risk for Cerebral Palsy and may never walk or talk. They also said that they weren’t sure if he could even see or hear. However, above all else, he was breathing on his own and his heart was in perfect condition, so eventually he would get to come home with us. Luckily for us this happened just 13 days later.

Since then it’s been a whirlwind! Jace was on blood thinner shots, twice a day, for three months. During that time he had weekly blood draws to monitor his levels. After three months, one clot was completely gone and the other was diminished enough to have blood flow through it. Jace is now doing great! He has continued hitting his gross motor milestones, and at 5 years old he’s a very rambunctious boy. Jace’s therapists and doctors have been amazed by him and what he can do. He currently receives OT, PT and Speech while at school as well as addition OT at an outside facility to help monitor and keep him as close to typical as possible. Cognitively, he has some delays but continues to make great progress and move toward where typical children his age are.

Those apnea episodes Jace had after birth(which stopped shortly after arriving to the children’s hospital) were found to be subclinical seizures. He was seizure free from 3 days old until September 15, 2015. His epilepsy is now controlled by medication.

Despite everything he has been through he is the happiest and most determined child! You will rarely see him without a smile on his face!!

Sadie’s Story

Sadie was born in the VERY early hours of January 30, 2016 at Overland Park Regional Hospital via an extremely uneventful cesarean after she was in no big rush to come out half sunny side up and over a week overdue. Our first day went as planned, with no significant issues and plenty of family and friends present to share our joy. The next morning, our family care practitioner and earthly angel came to check on both of us, after determining we were both doing great, we began to have a social discussion while I was holding Sadie. We noticed simultaneously that Sadie turned a mild shade of blue and she immediately took Sadie to run tests, during which she was oxygenated during her bouts of apnea. We were beyond blessed to have a wonderful, efficient and extremely timely care experience after our immediate NICU transfer with an EEG, echocardiogram and MRI that revealed Sadie had suffered a left middle cerebral ischemic infarct or more simply, a perinatal stroke, based on her brain development this likely happened approximately two weeks before her delivery. While the most common known causes of pediatric stroke are congenital heart defect, clotting disorders, or placental abnormalities, the majority of strokes occur without a definite cause being determined. Sadie falls into the latter category, although placental infarct is still a plausible option. We began therapy immediately in the NICU with speech and feeding therapists as well as physical therapists all giving us suggestions for home. Most recent studies are showing that early diagnosis, intervention and significant therapy can have lasting positive effects on long term outcomes as well as taking advantage of the ability for baby brains to rewire, a term called neuroplasticity. The area of Sadie’s brain affected is correlated to right hand function and speech. Currently after significant therapy, she is showing only mild right hand weakness and is actually ahead of her age from a speech and cognitive development perspective. We are so grateful for all of the amazing care she has received to date and overjoyed at watching her flourish as a typical toddler. We are grateful every day, but continue to work to ensure Sadie has access to whatever care she need to give her the best opportunity at having the most limited effects possible from her stroke. My standard line, compiled from various sources since Sadie’s diagnosis is, “Prayer, modern medicine and REALLY hard work go a very, very long way.”