Meet The Board
Marla Slovin
Hometown: Glenview, Illinois
Title: Secretary
1. When you joined the Board, how did you see yourself contributing? Has that changed over time?
When I joined the board it was while it was just an idea “How can we help other parents going through this?” Annette and I sat together for the first time sharing our stories and all of the fighting for services we have had to do for our boys. We agreed that we needed to do something to find more families that were going through the same thing. I wanted to take on an active role play an so no the other families dealing with KBG syndrome would ever be alone again in the journey. I wanted to contribute in the way of searching for others, sharing our stories and finding ways to raise awareness among the medical world so others will not have to wait a decade or so to know what they are dealing with.
The only thing that has changed for me is the astounding feeling of satisfaction that we needed to create a foundation and build a community through Facebook. The number of people that have found us is incredible and we are all learning from each other and leaning on each other for support. Our world is so different than others and we have become a family!
2. How does KBG syndrome affect you personally?
Both my husband and one of my sons have been diagnosed with KBG syndrome. They were diagnosed at the same time in June of 2014. Jordan was 13 and Terry was 52. They are like 2 peas in a pod – from their looks down to the KBG characteristics! Them being diagnosed affects me because I am always thinking what obstacle could be next? What will the future be like for everyone? My husband has set the stage for me as to what to look for in Jordan. Unfortunately, Jordan seems to be more affected than Terry so everything seems to be magnified. It is hard dealing with them on a day to day basis sometimes. Their issues are the same and communication is not high on the list. I have also realized that this diagnosis was easier to accept in Jordan than my husband. I have had to learn how to handle Jordan differently than his brother for things to work. I worry about the future of what will happen with all of those that are diagnosed with KBG.
3. What would you say to a family dealing with their new diagnosis? What advice would you give?
My first piece of advice to every single family that receives this diagnosis is to remember their child is their child (or their spouse, or other family member, etc) and they should not be identified or defined by KBG syndrome – ever.
The list of KBG characteristics may or may not happen to them and they will not happen in any specific order. For each characteristic that comes up, tackle it and use your gut instinct. Don’t let anyone convince you to accept what they say.
Be sensitive to oddities that appear and do not second guess yourself. KBG syndrome is made up of all “normal” issues – just not supposed to happen all in one person.
Visit KBG Foundation, read up on it, and be sure to ask questions through the Facebook page – every member has walked your shoes in some aspect, use each one of us for support. Each one of us knows more than our individual doctors as we are educating them.
The joy in this diagnosis is that you know why things are happening – knowing why doesn’t stop anything but it confirms that you are not crazy and that there is a reason that this is all happening. Most of all, don’t give up and realize that there are adults that live full lives, have jobs and have families of their own. There is a future to be had and we all need to be confident that there will be a cure and we will find more answers.
4. What do you feel is the most important result of raising awareness about KBG syndrome?
The most important result will be the need to do more genetic testing when there is a question about development abnormalities. The more awareness we have and the more documented cases there are the more likely there will be research. I would like everyone to know about KBG like they know about other genetic issues so no one will ever feel alone. We already know that there are people out there that have not been diagnosed and it is our job to get the word out there.
5. Where do you see KBG syndrome in 5 years? In 10 years?
This is the hardest question I needed to answer – 6 years ago I never heard of KBG. I am hoping that we will raise enough awareness to push the medical community to learn about KBG.
I spent so many years with no official diagnosis – I want the doctors who think there might be a problem to act on that gut feeling and order not just a regular genetic test but one that will identify rare diseases. I want to help other families from having to navigate in what feels like unchartered waters.
In 10 years, I want there to have been more research conducted so that someone is working on identifying a cure and finding more about what we don’t know. I want there to be many papers published and I want answers. I am going to hope that as more people are identified and more research is done, we will have a stronger foundation and many more Facebook followers.
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