COTA for Finley Strong

Our Story

“It’s a Boy!” Our sweet Finley Laine was born August 31, just in time for the long Labor Day weekend ahead. Becoming new parents wasn’t exactly something we prepared for but just like all first time parents, we brought our little man home looking forward to what this new life had in store. Little did we know that our story would be a lot different than most. We got a call the Saturday after Fin was born that his newborn screen was showing an elevated amino acid level that indicated he may have an extremely rare genetic disorder but would need more testing to confirm. After an appointment with our pedi clinic the following Tuesday we were being re-admitted to our local hospital because Fin had lost too much weight. At 8 days old we were taking our first Flight for Life helicopter ride from Tyler to Cook Children’s in Fort Worth because Fin was no longer eating and inconsolable when he would wake. After multiple tests it was confirmed that our sweet 10 day old boy had MSUD (Maple Syrup Urine Disease) and if left untreated can cause significant brain damage and even death. This genetic disease is metabolic in nature and impacts Fin’s ability to breakdown three of the main proteins required by the body causing those levels to rise and creating neurological issues. He is one of about 2000 people in the country with this diagnosis. Over the three weeks we spent in the NICU we watched our little man fight his way through more medical procedures than most adults will ever experience including intubation and mechanical ventilation, being placed under medically induced paralysis, dialysis, and feeding tube placement. We were fortunate enough to have the most incredible medical team possible who, while their decisions were tough to swallow at times, took care of our baby as if he was their own. The staff at Cook is top notch not just from a medical standpoint but from a human standpoint. They’re invested in their patients and took my expectations as a medical professional and exceeded them 10 fold. We are forever grateful to them and while we could only wish this was a one-time event, we would be working with them for the rest of Finley’s life… Or so we thought…

Fin’s story took a turn when we had to transition care to Children’s Medical Center Dallas shortly after coming home. To say we welcomed them with open arms would be a lie however they’ve done nothing but amazing things for our boy. This team is passionate about the care they provide to Finley and have made the best decisions for him. They’ve navigated his fluctuating protein levels with ease, keeping him stable for weeks at a time which can be difficult with this disease as the smallest changes such a teething, stress, or illness can impact his protein levels. They have also been onboard with our plans for Fin since day one of assuming his care. To avoid any further complications from MSUD we’ve chosen to pursue the treatment of a liver transplant for him. Finley is currently listed with UNOS and we are awaiting the call that they’ve found his perfect matching donor organ.

Just like patients with MSUD, liver transplant patients require lifelong care which is why we’ve decided to partner with the Children’s Organ Transplant Association (COTA). If you’re able, please consider donating to COTA in honor of Finley.

Throughout our short introduction to parenthood we’ve learned that we have an extremely large village of people who love, care, and support us even when we’re too stubborn to ask for help. Between our families, friends, coworkers, church members, and even people we don’t know personally, we we’ve been showered with so much love and we are forever thankful.

Despite the rollercoaster of emotions this chapter has brought to our lives, the thing that we continue to see just how faithful God is. Even in the darkest times we’ve seen Him and His goodness. He’s carried us and He’s protected Fin. He brought us closer together as a family, showed us what in life was truly important, strengthened our trust in Him, and made us better people. He softened people’s hearts and mended a couple of relationships along the way. God truly turned something terrifying into something so good and we continuously praise Him! We know that He specifically chose us to walk this path; we are more blessed than we deserve. We can’t wait to see what He will call Fin to do as we can only believe that He has BIG plans for our boy.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.