Faustina's Medical & Assistance Fund
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Welcome to the Support page for Faustina and the Sarrazolla Family. This GoFundMe has been created to support my granddaughter Faustina and her parents as they navigate a life-changing diagnosis. Faustina has been navigating extensive gastrointestinal and feeding issues since birth but now, she faces a harrowing new set of diagnoses including, unidentified brainstem abnormality and a working diagnosis of a rare, genetic disease with poor or terminal life expectancies.
Faustina’s Story
Since birth, Faustina has struggled with swallowing difficulties (dysphasia), severe infant GERD, excessive vomiting, feeding aversions and poor growth. After countless doctor visits, two feeding studies, feeding therapy, and ER visits - Faustina was admitted to the Pediatric Intensive Care Unit (PICU) for placement of an NG tube. Initially, this seemed like the answer ... but it was just the beginning for this sweet girl.
A few weeks later, Faustina developed tremors in her hands and arms. Neurologists conducted EEGs and other tests, with no answers. While Faustina's growth improved, her tremulous activity continued over the next month and a half. Faustina was set to have Gastrostomy (G-tube) surgery in June to help further support her nutritional needs. At this time, an MRI was performed that dramatically changed the picture we had of little Faustina. Hoping to confirm a diagnosis of an essential or benign tremor, doctors found the exact opposite.
Faustina has been diagnosed with an unidentified brain abnormality within her brainstem and midbrain, primarily located within the pons. These findings have baffled neurologists and radiologists. Consultations across the PNW, from Phoenix to Seattle have shared the same sentiment - they have never seen anything like this before. Additionally, blood work has suggested a possible answer...doctors have provided a working diagnosis of a rare, terminal genetic disease of Faustina's mitochondria and metabolism. The progression of this disease consists of the slow deterioration of the brain and body, as it struggles to produce energy. The family's prayer is that in-depth genetic testing reveals an alternative cause.
Despite the cause of this brain abnormality, it is clear that the lives of sweet Faustina and her family will never be the same again.
Due to Faustina's increased level of care, need for additional monitoring equipment, and medically fragile condition she is unable to return to daycare. Her parents are working diligently to find a way to financially support her current and anticipated treatment needs in addition to transitioning from full-time work into a full-time caregiving role.
Most importantly, Faustina's story continues to give us hope. Doctors have been impressed with her resilience and ability. She emits so much joy, laughter, and light. You would never suspect she is [and has] been battling such a grave reality. Her parents and family have been focused on grieving, adjusting, and enjoying every minute they can with Faustina.
“It’s every parent’s worst nightmare come true. We have known for a while that something was wrong. But, never in this lifetime did we think we would hear those words…We’ve been left with broken hearts and few answers. Each day, we’ve done what we can to keep moving forward. Faustina’s incredible joy, light, and positive progress keep us going. If she can suffer so beautifully, we can too. We keep trusting in God, praying for answers, praying for the strength to keep fighting for her.” - Nate and Sierra
The Need
Faustina's conditions and ever-increasing medical needs are creating a growing financial need. Faustina has been receiving care from 4 specialists, her pediatricians, in-home nursing, and occupational and physical therapy. This year, Nate and Sierra have relied on their insurance coverage, already paying almost $10,000 in out-of-pocket costs this year - this does not include last week’s genetic testing not anticipated to be covered by insurance. Nate and Sierra have additionally had to cover other costs out-of-pocket including meals during Faustina’s multiple hospital admissions, adaptable clothing for her G-tube, small supplies such as gauze or tape not provided by their distributor, and even some medical devices.
With medical costs climbing, and years and years of chronic care anticipated, they will continue to need financial support. Nate and Sierra additionally hope to seek specialized treatment with out-of-state clinics to ensure Faustina receives the best care and that she has the highest quality of life possible.
The family additionally anticipates significant adjustments to incomes as Faustina’s level of care has become too great, meaning she is not able to return to daycare. Her feeding equipment, sleeping monitors, and neurological/development concerns have made this challenging - but most importantly, Faustina’s geneticist has indicated that sickness, even the common cold, can place a huge and taxing stress on her little body, risking the worsening of her condition. Nate and Sierra are working to adjust their jobs, hours, and responsibilities at work with the intent of providing Faustina with the most intentional care possible. This, is without a doubt, the most financially stressful piece they face at the current moment.
“Our life feels upside down and our hearts feel broken. We loved the life we built and now, amidst trying to manage everything with Fausina’s health, we are still left trying to manage significant changes in our careers, our ministries, and our finances. We feel life has truly emptied us of ourselves and now we know it’s time to ask for help - because we need it…emotionally, financially, spiritually.” - Nate and Sierra
The Ask
Our prayer and hope are to support this family and raise funds allowing Nate and Sierra to focus on the one thing that is most important - spending intentional quality time with their daughter. Every little bit counts and any contributions financially or those of prayer would be incredibly appreciated. As a community, we trust that we can make an incredible difference in the lives of this family and most importantly, for little Faustina.
A Note of Faith and Trust
“We believe that miracles are possible and trust that Jesus and His grace will carry Faustina and our family through everything that awaits us. In our prayer we are asking for complete healing and restoration for Faustina, in thanksgiving for everyone supporting us, for the guidance of her physicians and providers, and for the grace to accept whatever is to come.
Jesus, we trust in You and in Your mercies.
Saint Faustina Kowalska, Pray for us.”
For more information on Fausi's story, please visit her CaringBridge site:
Organizer and beneficiary
Gretchen Sarrazolla
Organizer
Boise, ID
Nathaniel Sarrazolla
Beneficiary