Family by Fate: Meet the Ng-Gerritsens

This is the first in a series of ‘Family by Fate’ articles intended to help our community get to know one another better

Yvonne-Ng-Gerritsen, her husband, Wim Gerritsen, and their nine-year-old daughter, Naomi, and six-year-old son, Toby, live in Barrie, Ontario 70 miles north of Toronto. Toby was diagnosed with Kleefstra syndrome at five-months-old.

How has your family’s journey evolved since Toby’s diagnosis?
We had a really tough first year, being in and out of hospitals, not knowing what to expect. As Toby started getting older, he also started getting stronger. The pandemic was a blessing in disguise for our family, because we got to spend time together, and really help develop his skills while watching him grow. In the pandemic, he learned to walk and talk for the first time around age 2. Since that time, we have watched him flourish over the years with his speech, feeding, toileting, and motor skills. In grade one, he learned to read, write, and spell, and is demonstrating good progress in his IEP. As we celebrate all his successes, we still acknowledge that he requires additional support, which include regular visits to speech therapy and occupational therapy.

In his leisure, Toby enjoys reading books, swimming, and monitoring the weather (worldwide)! We do our best to meet him where he is at, and to encourage him every step of the way! It’s been such a joy watching him grow up.

What is the KS community like in Canada?
When we first received our KS diagnosis, we were told that the numbers were far and few in between. However, as we started researching and building connections via Facebook groups, we’ve seen the KS community in Canada grow. To date, we have made some close connections with local families in Ontario and visit each other when we can. Most recently, we found a family who lives in our SAME neighborhood! It’s definitely growing, but we would love to see something more established, like a Canadian branch of IDefine, or something similar in the near future.

What does Family by Fate mean to you?
This Kleefstra community has provided us with a foundation of families who can understand the ins and outs of the condition. We have learned SO much from each other and can offer support and empathy without any judgement. There’s been a strong sense of community among this group of strangers who are connected by these beautiful children who inspire us to advocate and raise awareness for their futures. We’ve had the pleasure of attending two IDefine conferences, which in a way, feels like a long-lost family reunion!

What is your family’s greatest KS-related challenge?
Our biggest challenge to date is….SLEEP! Toby wakes up every night approximately 2-3 times a night. We’ve tried everything in the books and still struggle to date. At this point, he ends up co-sleeping with us, and so our quality of sleep has gone downhill over the years. It is a constant challenge that we continue to track.

In addition, Toby has been officially diagnosed with Autism, alongside his KS. This leads to his repetitive questions, need for daily routines, and occasional meltdowns/attacks.

What is the greatest lesson Kleefstra syndrome has taught your family?
One of the biggest lessons in our journey so far is understanding that there are no set milestones for development, and that we should be so proud of every development and change, big or small! The future remains unknown, so there is no point of worrying now. Instead, we have to do our best to stay present and to celebrate where we are currently at.

What is your best piece of advice for newly diagnosed KS families?
Join ALL the Facebook groups!!! Stay connected, and message one another! The Facebook group was a saving grace for us. For every hospital visit, every new symptom, every milestone celebration, it’s been amazing to share it with a group of people who truly understand what it means. It’s also amazing to scroll through and stay up to date on every family’s journey. Each KS child is so different and unique, yet we are connected by this fateful journey.

Why does your family raise money for KS research?
It is a cause that is near and dear to our hearts, so we do our best to fundraise yearly within our own community/network. The more funds we can raise for research, the greater the awareness and potential treatment for ongoing challenges within the KS diagnosis. We strongly believe that these initiatives can make a difference in the future of KS families.

Learn more about the Ng-Gerritsen family by watching this interview from the 2024 Kleefstra Syndrome North American Family Conference.

If your family would like to participate in a Family by Fate feature, please contact matt@idefine.org.