We are so excited to continue to highlight an extremely important group of people in our Rett family, our Rett BOYS! Read on to hear Kate and her son Colin’s journey with Rett Syndrome!
What is one piece of advice you would give to a rett mom who is struggling?
Reach out to other parents of children who live with Rett Syndrome. It helps to know that you and your child are not alone.
What would you tell a newly diagnosed family?
Please know that this child will fill your house with love and everyone in your family will be forever changed for the better. This child will teach you so much about resilience, inner strength and human dignity. Be mindful of what you say in front of them. Just like any other child, they hear what we are saying and absorb it.
How is rett syndrome different in boys than girls?
It isn’t easy for any of them (females or males). However, the majority of the boys are very sick and yet they have to take a back seat to the girls when it comes to the research. This is so hard to accept, because so many of our boys have recently passed away. I don’t want to see another one lost.
What is your Rett Boys favorite activity?
Colin loves car rides with a good view and great tunes! He bops along to songs with a good beat! Who doesn’t?
What has been your biggest struggle so far?
When he becomes frustrated he hits his head with his little fist.
What has brought you the most joy?
So many things! His dancing to the music. His laughing fits. His sassy attitude. His comic timing. When he tries to give you a hug or a kiss. The reaction when Colin see’s his brothers and sister after an absence. They love each other so much.
How do you continue to make time for yourself?
I find the most beautiful place that I can find and take a walk. If I can’t do that, I take Colin for a ride on a scenic road and play some good music. I read when I can. I write when inspired. I drink herbal tea. I buy myself cheap flowers at Trader Joe’s or pick some from outside. I work part time.
What do your Rett Boys goals look like?
My #1 goal for Colin is that he will someday soon, be able to define his very own goals. My goals for him are secondary but I wish he could fully use his hands again, walk with less difficulty and talk with others. I also wish that he wouldn’t feel so frustrated at times.
Thank you so much to Kate and Colin for giving us a glimpse of your lives together. We continue to celebrate ALL of our Rett kiddos and their accomplishments!