How it all began...
Hello - my name is Kirsti Bakker, and I'm the (first) President of the XLID98 Foundation. In August of 2014, in the mountains of Nova Scotia, I got a call that would change our life forever. After years of genetic testing, our 17 year old son, Liam, was finally diagnosed. KIAA2022. What was that? I had never heard of it. Neither had Liams geneticist, Dr. Walia. During the 20 hour ride home from NS, I scrolled through the internet, and only found pictures of a few boys from another country with the same disorder. There was no help to be found. Nothing except some medical jargon that I had no clue how to decipher. No one to contact who would understand what we were going through. We were still alone. I decided to have our local newspaper write an article about our son. In this article, Dr. Walia’s name was mentioned, as well as KIAA2022. A few months later, Dr. Walia called me saying that a family from the Netherlands had a son with the same disorder, and would like to get in touch with me. Absolutely!!! He forwarded the email to me, and what did I do? I immediately went on Facebook and typed in the mothers name. I knew I found her. Her photos of her son looked just like my son. I started crying. I messaged her, and she responded immediately. We were no longer alone. I decided to set up a Facebook group. There must be more families out there with a child like ours. Little by little, over the last 8 years, families have found our Facebook group (KIAA2022/NEXMIF/MRX98/XLID98). Recently, Dr. Walia contacted me to ask if I would be willing to start a foundation, as he was wanting to start the research for a cure. I contacted others in the Facebook group to help start the Foundation, and here we are.
The XLID98 Foundation works to support people and affected by XLID98 (sometimes referred to as KIAA2022/NEXMIF/MRX98) worldwide. This support includes work to establish community, educating families, fostering collaborations with physicians, scientists, other patient advocacy organizations, raising awareness, and supporting medical research that can support treatment and quality of life.
Watch this space for news about our work - and how you can help. We are all in this together!