My wife Chelsea & I started our Family in 2013 with our first born son Lochlan. By 2016 we were ready to expand our family & so excited to be pregnant again. We dreamed of our perfect family and all the memories we would make exploring the world and experiencing all life had to offer. Pregnancy was tough but relatively normal and when it came time, we were well prepared with a room ready and our bags packed.

We prepped for delivery and waited for our perfect new addition to arrive. Complications arose as labor started with baby’s heart rate dropping to dangerous levels. An emergency c-section was recommended and off we went.

Fynley was breach with the umbilical cord tightly wrapped twice around his neck, our perfect boy came into the world and the delivery room went quiet, the nurses and doctors focussed and the room remained quiet. No sweet sounds of our baby’s “welcome to the world” cry, just silence and a sense of uneasiness.

Fynley was rushed to the warming table purple and struggling to take his first breath. The team worked hard to get him breathing and just when it seemed impossible he took his first breath (gasp).

The nature of his birth was traumatic. We were panicked, Fynley’s life hung in the balance. We did not hold him, we barely heard him cry and they whisked him away for assessment & treatment.

With the team still finishing the c-section process, I was ushered away to the NICU to be with Fynley, my wife alone and in recovery, she was unable to hold our sweet little boy after birth.

Fynley spent over 96 days in the NICU with a laundry list of issues consistent with pre-mature birth. But the mystery remained as he wasn’t a true preemie born at 37 weeks and 4 days. He had breathing issues, necrotizing bacteria in his bowels, an over sized head and could not seem to maintain a normalized heart rate. He wasn’t able to keep food down and every time reflux happened he would aspirate & stop breathing. Time and time again panic would set in and every time we thought we were almost ready to go home, Fynley’s body would have other plans.

Then came the path to diagnosis. At the time

We still couldn’t comprehend what that meant. We were still in a place where we pictured recovery and home to the life we dreamed of.

Genetic testing would pave the way. Fynley was diagnosed with a rare genetic disorder. At the time he was born, only 14 children in the world shared a similar diagnosis and none would be exactly the same. Fynley has Micro Deletions on the petite arm of the 19th chromosome relating to Marshall Smith Syndrome and Malan Syndrome. He suffers from severe Scoliosis, seizures, overgrowth, is non-verbal and will be in a wheelchair for the rest of his life.

Major surgeries followed for scoliosis & to avoid reflux. A feeding tube was implanted and a procedure was done to stop regurgitation. Fynley can gag but he can longer burp or throw up.

This was a crushing diagnosis for us as we had a vision of what our lives would be as a family of 4. We had tried to remain present for our first born Lochlan but the first 6 months of Fynley’s life were incredibly stressful and time consuming. We were feeling guilty and consumed by stress & lack of sleep. We came to learn we were mourning a loss of the shared vision we had for our family.

As we settled into our new normal & our family began to stabilize we embraced the life and duty of parents/caregivers to our medically complex child. Balancing appointments became an art as we managed the small army of specialists & teams that have come to support Fynley. Surgical procedures became commonplace and extra costs frequent. Wheelchairs, communication devices, supportive equipment (walkers/AFO’s/adaptive mobility tools, lifts, ramps, incontinence supply, bath lifts etc.).

We have always been committed to giving Fynley the best life possible but he continues to grow and gain weight. This means stress on our bodies as we lift him in & out of bed , into the bath or load him (and his wheelchair) into the family van. Appointment time commitments, medical episodes and assessments mean that we are a single income family with limited resources. We do the best we can in todays world of increasing costs but we have to admit that there are necessary things that just are not financially possible for us on our own.

Fynley is 9 years old & lights up every room with his zest for life and cheeky personality. He thrives on routine & activity & loves to be around family and peers. He loves music & his older brother & younger sister. He doesn’t take no for an answer and continues to grow in ability & size. Though he will never communicate in a traditional way or live unassisted, he enriches our lives in ways many may not understand.

Our goal is to give him every advantage in life and to ensure he is always loved and supported in our family home while maintaining our own strength and mobility while the grows.

We are seeking support for redevelopment of our bathroom into an accessible, supportive space for both Fynley & our family in addition to a wheelchair accessible van to support safe, inclusive family transportation as Fynley ages.

These developments would change the course of our family forever as we continue to love and support Fynley while providing an inclusive, accessible and loving family environment for the rest of his life.

We would be grateful for any support we are lucky enough to receive while supporting Fynley’s journey.