By Caroline Bilal
My Son – A Mystery
I swore to my husband that my second-born would be my easy baby. My oldest child, a boy, had been a real piece of work. Or so I thought. Everything I tried feeding him was either chugged across the room or spat out. He disliked chewing so much that I succumbed to feeding him baby food out of the jar until he was 4! It was frustrating, sometimes even infuriating, but as I said before, my second child would be an angel of a baby. Little did I know that super parenting would take on a meaning of its own when my second son was born.
Yonas was born a perfectly healthy baby. It was a picture perfect beginning and Yonas did everything by the book – smiled at 4 months, held his head at 5 months, even rolled over at 6 months. There really was no reason for concern. Until one day, that is, at around 8 months of age, when we suddenly noticed the left pupil of his eye droop outward. I remember the ophthalmologist asking me whether he had any other muscle weaknesses and I, confidently as could be, firmly shaking my head. In retrospect I wonder, of course, did we miss something? It’s hard to know what you don’t know…
We started patching Yonas’ eye to strengthen his eye muscles but things went drastically downhill from there. He wasn’t meeting any of his developmental milestones and even at 1 year old wasn’t sitting or making an effort to crawl. In fact, the left side of his body remained significantly weaker than his right side and it was enough concern from his pediatrician to recommend Early Intervention. Yonas didn’t crawl until 1.5 years, sit until he was almost 2, walk until he was nearly 3 years old – right around the time that he also developed seizures. And so began our long journey of discovery and research to uncover the mystery that even the most experience medical professionals acknowledged.
47 doctors later, having seen the inside of every hospital in and around New York City and an entire year waiting for the genetic test results, we finally had a diagnosis: Syngap1. I’m sorry? I was really confused when the geneticist shared the results since it didn’t align to any of the other “diseases” I could unearth on Dr. Google.
This rare disease was so “new” that scientists hadn’t had enough time to come up with a more creative name. Instead, to this day, it bares a more functional name and perhaps ironically, inherent in its label is its biggest flaw – Syngapians only have ½ of the Syngap protein – an essential protein that enables optimal neurological functioning and facilitates learning in the brain, both of which are affected in this unique patient population. Uncovered in 2010, this syndrome and genetic defect leads to a multitude of challenges including moderate to severe intellectual disability, autism, complex seizures and low muscle tone, to name a few.
Rationally and logically minded (that is perhaps the German in me), I mourned for about a day and then rapidly transition into problem-solving mode. I knew that learning anything and everything that I could about the disease and about the supports available to a child with Yonas’ profile would be key to helping optimize his potential. But it was hard. Where to start?
A Long Road
I think the hardest part about having a child with a rare disease, and perhaps any special needs, is navigating the wealth of information and accessing the right kinds of information. This phenomenon is further exacerbated by the fact that most information is accessed via word of mouth. It is often not as simple as typing something into google and landing at the information that is needed, which is actually quite shocking (and in some ways intolerable in my mind) given the age of technology that we are in. The disability community and their families have truly been neglected by the tech industry.
Giving up all opportunities for a professional future, I left my day job to care for our son full time, and searched everywhere and anywhere I could for information that allowed us to make better choices for Yonas in securing the best kinds of support. I visited more than 15 different educational programs to ensure Yonas would receive the best school placement, spoke with countless therapists to ensure that he was receiving as much intervention as minutes in a day and spoke to as many parents of neurodiverse children as I could to secure state funded programs and services that he was eligible for. While we did not have a diagnosis for a long time, I knew that finding our son help was time sensitive if we wanted to maximize his potential as efficiently and effectively as possible.
When Life Gives You Lemons…
While developing into an effective parent advocate in this world of rare disease is not always easy, there is a silver lining in all of this. I found strength in my own growing expertise of “how things work” in being able to turnkey this knowledge to other special needs parents, especially those in my own community. I spent a significant amount of time sharing information and speaking with other families and while deeply satisfying, I couldn’t help but notice how narrowly impactful my help was. I sensed an urgency in parents’ ability to connect to essential information quickly and it wasn’t unique to a handful of parents. It was and is a pervasive issue and I sensed early on in my research that technology could play a critical role in helping parents such as myself.
After about 2 years of speaking with other families, I built a team of volunteers and co-founded a tech company along with another mama bear who was equally intrigued in helping this unique parent community. MyConnect is a special kind of social network that facilitates accessibility to essential information more effectively and efficiently through the use of technology and the power of community.
I heard from parents time and again that they wanted to know what programs, services and therapies exist in their local community so we built an expansive program directory that allows parents access to information about schools and educational programs, therapeutic programs and providers, and recreational programs, just to name a few. Parents explained that they want easier and a more systematic access to other parents with similar challenges as them, so we decided to leverage AI technology to match parents based on their child’s profile. Consequently, parents also mentioned needing more comprehensive “step-by-step” instructions on how to best support their child from knowing how to set up a special needs trust, to applying to government-based programs, to managing their child’s tantrums and behaviors. And so, we enrolled local experts to submit written works and literature that they can post on a discussion board to further flex the advocacy muscles of our special parents.
It is my deep belief that parents, regardless of their socio-economic status, have free access to the information that enables more successful advocacy for their special children. While I was fortunate enough to have the skillset, the time, the financial resources and the endurance to pursue the research that ultimately helped my son – all parents should be given the tools that affords them this chance.
Building Essential Relationships
I stopped comparing myself and my family to others long ago. I have learned to see the comedy in the fact that while other families spend hours on the playground or going to the movies, we spend hours in the appliance section of Home Depot and discussing the latest models of the Otis Elevator Series. It is precisely these kind of (sometimes odd) life experiences that only other special parents can relate to – it shapes a uniquely irreplaceable bond driven by ample empathy and sharing. It is precisely these essential relationships we want to facilitate and help create through the MyConnect social network.
Yonas is my forever baby – and this long journey that we have been on (and will continue to explore) has given me the leeway to learn the true definition of acceptance. But beyond acceptance, Yonas has also driven me to an incredible place of inspiration and vision, where we all live in a world that is characterized by stronger and more supportive relationships between people, ultimately facilitating a more inclusive and equitable world for all.
As a long-time professional in the non-profit industry, Caroline Bilal has always demonstrated a deep commitment to solving issues of social injustice. A parent of a child with rare genetic syndrome called Syngap1, she is also the co-founder of MyConnect – a tech startup that aims to connect special needs families to supports and programs more efficiently through an online program/provider directory and to other parents with kids who have similar challenges more strategically. Caroline was first inspired to launch MyConnect as a result of her own struggle to navigate the wealth of information and connect to local programs and support providers. As a parent advocate and with a deep understanding of how difficult it is to navigate disability services, she is eager to continue to support families in the hope that one day all special needs parents will be able to access information with ease! She lives with her husband and 4 children in Chappaqua, NY.
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