Stacey Kurut

Hi!!! My name is Stacey, and I am a previous therapist of sweet little Tyson. His family truly is one of the most remarkable families, who invest a tremendous amount of love, time, compassion and effort in order to help their Miracle Baby reach his maximum potential. We would love for you to follow along, as it is a testament to the power of prayer. Please follow their journey through this page, while also praying for continued miracles and resources necessary to utilize the many opportunities as possible. Our ultimate goal is to help TyTy live as ordinary of a life as possible. Mom has provided the story of the first 2.5 years of little TyTy's journey, below. ”After an uneventful first half of pregnancy, we discovered at the 20 week anatomy scan that Tyson was suffering from severe IUGR (intrauterine growth restriction) and severe Oligohydramnios (significantly low amniotic fluid). Our obgyn felt Tyson’s situation was catastrophic— he was a very sick baby. His belief was that given his current state and whatever underlying condition led him to this point, that he would not survive the pregnancy. Heartbroken and grief stricken, we went home, shared the news with our 5 other children, with our family and friends, began preparations for his imminent passing and we all prayed. We scheduled an appointment for the next week to confirm the inevitable loss and schedule the delivery. Each day we were covered with prayers and belief that while we might not meet this baby alive on earth, in God’s time we would have the chance to meet again in Heaven. At our next visit, we were all shocked to find a beating heart. Unfortunately, the immediate feeling of relief was once again swallowed by anxiety and dread as we scheduled the next week visit. The next week we were all surprised there was still a beating heart, but with no changes in his conditions we were left with the same prognosis. We continued with this same cycle of waiting, preparing and praying to find peace and acceptance for 6 weeks. Each week, astounded that we continued to find a beating heart. Without any clear medical indication as to what was occurring, about 7 weeks into our weekly ultrasounds, a few pockets of fluid were found surrounding the baby that were not previously identified. The next week on ultrasound, even more fluid, a now measurable amount! We went back for another full anatomy scan and learned that while still suffering from both conditions, Tyson had continued to grow and develop all of this time and he had begun developing more amniotic fluid! We continued weekly appointments and decided at week 30 that while we still did not know what had triggered Tyson’s condition and if this condition was compatible with life outside the womb, that we would do our best to deliver him alive and just trust it was all in God’s hands regardless of the outcome. At 34 weeks, he was born via a c-section and weighed only 3.6 pounds. In true Tyson fashion, he surprised the entire OR and NICU team when he came out crying and vigorous, requiring completely zero medical intervention! He underwent a series of tests within the first 48 hours of life and it was confirmed via a brain MRI of his rare diagnosis of Cerebellar Agenesis, meaning he did not at all develop a portion of his brain, the cerebellum. With how the cerebellum functions and what it controls we knew the complete absence of this could lead to major developmental delays in motor movements, speech, eye movements, behavior, and cognition. There are very few cases reported of this condition and we started his life really unsure of what his future could or would look like. But he was alive! For this we were humbled and blessed. He has since been evaluated by multiple specialists and we have ruled out any known genetic disorders or clear reason for his diagnosis or for what occurred during pregnancy. He is a medical mystery and a medical miracle. He is here with us today, solely because it was God’s will and His blessing to all of us lucky enough to know Tyson! At now 2.5 years old, he has subsequently been diagnosed with Ataxic Cerebral Palsy. He presents with significant gross motor delay as well as fine motor and speech delay. He is unable to stand unsupported or walk. But he IS able to communicate, to crawl on his belly, throw a ball, to feed himself, to engage with those around him, and most significantly has the desire and motivation to try to do everything!” I first met Tyson when he was about 8 months old. I was blessed to have the opportunity to be his Occupational Therapy Assistant. When I first met the family, love for this little guy exuded. As I look back, I am just am amazed, but not surprised of what they have accomplished. While I was able to play a small role and assist the family with different ideas and approaches to take with Tyson, I truly believe his progress stemmed from the commitment his family made to work with him daily. Initially, even though he was 8 months old, he had the motor function and strength of a 3 month old. He struggled to eat baby food, reach for items, babble, among many other developmental delays. As time moved forward and efforts continued, TyTy progressed to getting to where he needed to go by rolling on the floor, maintaining independent sitting for several seconds, grabbing toys, feeding himself with his hands, responding to commands, and so much more. Since resigning from my position as a COTA, the family has been so kind share updates on Tysons continued growth, while learning how to crawl, stand, and is now working towards walking. His personality is the SWEETEST--full of smiles, giggles, and absolutely loves anything ball-related. Unfortunately, time and effort are not the only costs involved in Tysons care. Family has had tremendous difficulties with insurance, but once gain, they persistently fought for and with him. The amount of stress and financial strain this has taken on the family appears heartbreaking from the outside. However, on the inside, it is so uplifting and encouraging to see the family's perspective, which is filled with hope and love. While I completely understand the family's apprehensiveness in starting this page, they have agreed that this is not about asking for money. It is about doing all they can to help Tyson get as much of a shot at life as any other child. I can assure you, every penny counts! The Brattens are a family who prefer to give, but with new therapies necessary, they are open to receiving resources to help pursue a continued improved quality of life. I just ask that you please pray and give, IF you feel led, in order to help Tyson receive the therapy he needs and deserves. I will never forget the day I sat in their living room and had the clearest vision of little TyTy playing TBall. He hit the ball and was running to first base. This image is as clear as the first time I saw it, and I truly believe he is capable of meeting this milestone, especially with continued therapy. After all of the work and advocating mom and dad have put in, the family has been presented with an incredible opportunity to send Tyson to Intensive therapy, several days per week. Unfortunately, this therapy is not covered by insurance and presents a significant out of pocket cost for the family. While his current therapy schedule of 4 hours per week have been beneficial, it has been very slow going. He is still a year or more behind in milestones, which is quite significant for his age. For example, he is 2.5 years old and still unable to walk. Tyson is in his formative years, so every bit of extra intervention can make a significant difference. This intensive program will be about 4 hours per day, 4 days per week. This provides SO MUCH hope for Tyson to get to experience life to its fullest. I am SO EXCITED to GET to be a part of following Tysons continued miracle-filled journey, knowing he gets this opportunity to thrive because I get to send prayers, while also getting to give a bit, financially. All funds will go directly to out-of-pocket expenses that are not covered by insurance. This includes, therapy treatments, equipment, orthotics, gait trainers, adaptive bikes, chairs, etc. Whether you feel led to give and/or pray, we thank you from the bottom of our hearts!