Teddy’s Story Living with DYRK1A

Not every child is the same so just follow your child's path they will do things in their own time.

Abby, parent of Teddy, a 1-year-old with DYRK1A

What is your family like?

Our family is so special since Teddy arrived. We all adore Teddy and we are such a lucky family to have our little miracle.

What do you do for fun?

Going on adventures with Teddy and just spending time with him.

Tell us about the biggest hardship you face.

My biggest hardship is finding out Teddy had a rare genetic condition and everything he has to go through daily it breaks my heart every single day that he has to go through so much but it never brings him down he is always smiling no matter what. He’s such an inspiration.

What motivates you to participate in research? 

To hopefully make DYRK1A syndrome known so that there can be more research and hopefully more answers for everyone who has DYRK1A syndrome and for us parents as it’s so hard not knowing about the syndrome and that professionals don’t know about the syndrome we never know what is going to happen next.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes? 

Providing some information on the survey and spreading awareness for people who may read this.

What is one question you wish researchers could answer about this genetic change?

What does the future hold for my baby?

What have you learned about your or your child’s genetic condition from other families?

There is a Facebook group with other parents in it whose children also have DYRK1A syndrome it is an amazing page and everyone will help as much as they can and give as much information as they can. It’s a very supporting group.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

It’s ok not to be ok, it’s ok to be sad, it’s okay to be scared, it’s okay to be worried, and it’s ok to ask questions. I was heartbroken that my son had this condition but it was also the last piece of the jigsaw for us when we got his diagnosis at 5 months old as we knew since 26 weeks pregnant that something was not right. It is a hard journey but our babies make it the best journey.

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