Stride On for Pediatric Stroke Awareness

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Our Story

     Our son, Jace, was born on April 29, 2012. He was born premature via emergency c-section due to fetal distress. When Jace was born he had to be bagged and taken straight to the NICU. About 12 hours after he was born he began having apnea episodes. When these would occur, Jace would stop breathing and need stimulation to start again. After some 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, 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 that new pathways 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 is hitting his milestones, and at nine months old is really close to crawling. Jace's physical therapist is amazed by him. At this point, she sees no need for ongoing therapy other than a brace to wear occasionally to help open the left hand. Cognitively, the neurologist doesn't see anything of concern at this point - but he will, of course, continue to be monitored.                Those apnea episodes Jace had after birth(which stopped shortly after arriving to the children's hospital) were found to be subclinical seizures. He will stay on medication until an EEG shows those are cleared up. He also passed his vision and hearing tests with flying colors prior to leaving the hospital.
     Despite everything he has been through he is the happiest baby! You will rarely see him without a smile on his face!!

Why the fundraiser?

When we were first told Jace had suffered a stroke before he was even born we felt a wide range of emotion. We were confused because we didn't even know this was possible. We were sad because we were told so many bad things right away and it's nothing you ever want to hear about your new baby. We were scared because we had so many unknowns about what the future would hold. Most of all we felt incredibly alone. We didn't know who to turn to for help and advice. We had friends and family but nobody had ever experienced this. We only had the doctors- who weren't the most positive people. 

Although we've been fortunate that Jace hasn't needed extensive medical treatment we know this isn't always the case. We decided to have this event to raise money that will help those families with expensive medical needs while at the same time raise awareness about pediatric strokes.

If we can help it, we never want another family in a similar situation to feel alone like we did.


                                                       ~Matt and Shiloh