Zachariah Jakub King was born 20:15 on 7th August 2011.

We planned to start a family after our wedding and bought our first home together, when we got the exciting news we were expecting our first child and we prepared it for our baby boy. Anna had some complications during the pregnancy and Zach was born after an emergency C-section two weeks early after Anna contracted pre-eclampsia.

Zach was born, despite being Jaundiced and lethargic for the first few days, and struggled to feed (we blame it on all drugs what Anna had during labor) we had our perfect boy with us.

Overwhelmed with emotions at first, a worry slowly started to creep into our lives when around 4 months old we noticed Zach was not meeting milestones (sounds familiar?).

We raised concerns with various professionals and were palmed off with ‘he’s just a boy, boys are lazy’ and ‘ah first time parents… don’t worry he’s fine’ … deep in our heart hoping they are right and he will soon catch up. It was hard to hear “we must try harder”, we are “missing window for finger feeding” while he was not interested in picking up anything or holding it in his hands.

As parents, we felt something was terribly wrong. He didn’t reach for toys, had nystagmus in both eyes and didn’t look at anything for any length of time. He appeared to have no interest in his surroundings. We were horrified and at the same time hoping this will pass.

Our fears were confirmed at 7 months old when Zach was referred to a Pediatric consultant. Years in, every test under the sun and countless appointments and referrals told us very little. We learned about Cerebral Palsy, Angelman Syndrome and various other conditions in the search for the missing piece in Zach’s jigsaw.

The term Severe Global Developmental Delay became his diagnosis and covered just about everything under the sun and told us nothing. Why was he born this way? What happened to him? Was it the pregnancy or labor? Was it something wrong with us?

As a man, I felt powerless to help the child I had yearned for all my life, cheated of the dream of having a child, a normal parenting experience, having a child that looked up to me as I did to my father. Something very primal in me felt broken that I could not father a healthy child.

I struggled with his constant emotional state, the lack of sleep and the unknown future ahead of us all.

Anna on other hand asked all the questions that a mother would ask. What did she do wrong? WHY US? We were angry with the world, with the doctors and midwife, with the GP’s who told us not to worry, who looked down at us being nervous first time parents. We searched for answers and kept coming up with a blank.

At an early age, we realized Zach was Dairy free, this would account for the nightly hour of screaming and pulling his knees to his chest. We decided after reading ‘Gut and Psychology Syndrome’ by Dr Natasha Campbell-McBride, to also make Zach’s diet Gluten, Soy and Casein free.

Our lives headed in a direction we hadn’t planned and didn’t have control of. Anna become the Therapist mum, incorporating exercises into every play time and I became a strong advocate for Zach, for disability rights and became very passionate about making a difference. I managed to get a job working with Children with Disabilities. I learned new strategies to help Zach cope in this world.

I think this was in part to subconsciously prepare me for the future and the other the realization that our lives would never be the same.

Zach developed epilepsy around 3 years old and my training kicked in. Again, the doctors would not believe us that he had Epilepsy. We gathered evidence and after multiple blue lights journeys to the hospital, convinced them. Another set of medication, another piece to the puzzle. Zach’s epilepsy as with so many of our children is extremely difficult to manage. We have tried multiple variations and combinations of many drugs and he seems to go through periods of little activity to many seizures a day. His seizure presentation changes also in how they manifest themselves physically making it difficult to pin down to a particular type of event. He was prescribed Buccal Midazolam after a 45min seizure which led to 3 days in intensive care.

We explored many therapies and traveled all over the country to different centers to try and give Zach the opportunities to fulfil his potential. He struggled, screamed, adapted, cried, surprised us and gave us hope. He cried some more and surprised us again. He learned new skills then lost them again, this was to be the pattern for Zach.

We fell deeper into the isolation of the world of disability families and struggled with our own feelings towards Zach and each other. We kept talking, sharing, supporting each other and pulled ourselves out of the Abyss. The daily grind of set meal times, strict medication times, having to produce all his meals and not being able to plan anything for certain as it often depended on Zach’s mood on the day became an unwelcome routine

We both yearned for the dream, the ‘normal’ parenting experience. Disability was defining our lives. Every time we saw kids playing in parks with their parents, doing ‘kid’ things, hearing kids talking and laughing, our hearts broke again and again. We lived in a world of deep loss and all-consuming grief.

Zach struggled with sleep most of his early years. We found this the most exhausting and draining for both of us. It surely didn’t help Zach either. He was extremely emotional nearly every day, outbursts, frustration? Pain? Anxiety? Depression? Our constant question and no possibility for Zach to tell us what happening to him and screaming and trunk extension became his method of communication. Zach over the years tried several sleep medications with little success until his neurologist prescribed Promethazine in 2020 which to now has been a godsend.

In 2013 we heard of a Genetic nationwide study Deciphering Developmental Delays and signed up immediately. Initial results showed his genetic mistake was de novo. We were hopeful that the study would shed some light into Zach difficulties, we never thought we will need to wait for this 5 years missing deadlines after deadline for results, continually told another 6 months…

Both Anna and I agreed we wanted another child but had to wait for the results in case our second was at risk of having similar condition as Zach we were told there was a 1 in 5 chance of it happening again.

4 months after Gabriel was born, we got the news we waited for so many months. Zach had a Grin1 genetic misspelling, answers that led to so many more questions that we all know too well. It didn’t change how we work and engaged with Zach but gave a bit more understanding to Zach’s difficulties and most importantly gave us opportunity to connect with other families who were going through similar experiences.

We were surprised, shocked and awed at the development of Gabriel against his older brother. This too was a double edged sword, every time Gabriel did something new, our hearts broke for what Zach could not do. It was such a strange rollercoaster of emotions. Grief crept in again and again, we struggled seeing Zach as a child, as our child. We went through a real roller-coaster of emotions and feelings, at times, to be brutally honest, resenting Zach for making us live this experience but at the same time determinate to make his life full of opportunities.

The diagnosis of GRIN gave us opportunity to reach out and we found our “new family”, a collection of families from all over the world living the same experience. Zach found his genetic Twin and even met him in 2019. We shared experiences, stories, nightmares. We were surprised at the range and degrees of physical and intellectual disabilities across the other Grin kids and hopeful that one day Zach could do some of these things.

It has been a tough and emotional journey. We are glad that at present Zach is in a much better place now, it might to be mix of various medication and better sleep, we don’t care as long as this will last … he is more settled and we are beginning to “see” him again, connect with him on a level we thought we never could.

We are shocked at the similarities in many of our kids. Reading your stories sounds so familiar and we see Zach in so many of your children. There are so many answers still to be found and thanks to the wonderful folks in this family, maybe one day we will have some, some hope for the future, some hope that Zach can lead a better life.