A Father Shares the Emotional Reality of Raising a Child with Sanfilippo Syndrome

Terrence Merrill shares the challenging emotional realities of raising a child with Sanfilippo syndrome. You can read more background about the Merrill’s battle against this rare disease in our article here.

Why do I love this picture?

This was taken before I began to suspect there was something wrong with my daughter. This was the first time she sat across from me at breakfast. This was taken at a point of so much anticipation of what was to come.

I was talking with a client today about this picture, and how it was one of my favorites. When I took the picture, I was imagining sitting with her as an old man talking to her about life– imagining what we would talk about. I remember what we ordered and how proud I was to sit across from my big girl. She was so excited to not sit in a booster seat or high chair. She sat so well and used her fork.
I’m scared of this picture now. Just a glimpse can stop me in my tracks and crush me. I’m in a constant battle with myself now, balancing my feelings and emotions.

Being vulnerable is the only way I can put myself in a position to truly see a glimpse of my daughter, but it breaks my heart.

I can make it through most days by living in the moment, caring for her at an emotional distance, and, in an almost analytical way, adapting to the situations that arise. I’ve almost been conditioned this way throughout my life and my experiences. I used to never second guess my reactions and feelings, but now I feel incredibly lost.  The defenses I put up and way I used to deal with difficult situations no longer work. I feel like I don’t even know how to be anymore.
I’m in a constant battle between being emotionally vulnerable and functional. I catch myself often reverting to my usual demeanor. I feel like I wage an internal war to allow myself to see my daughter. To take an extra second and look into her eyes. To hug her longer and more tightly. To make her smile. To love her unconditionally.

To me this picture is my Leila. Incredibly sweet, caring, smart, and loving. This syndrome is slowly taking her away from me– and yet, this picture reminds me to be vulnerable.

If you would like to donate to Merrill family’s GoFundMe, click here.


Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu