A letter to my sons

Dear Damien and Dominic,

I loved you before I ever met you.

When your dad and I found out that we were going to be parents for the first time, we were so excited we couldn’t wait for our family to grow. Finding out that our family would grow by two just doubled our excitement.

For 9 months I carried you both inside of me, as my belly grew so did my heart. I hoped for you to be happy and healthy. I dreamed of all the things you would do in your life and the memories we would make together.

Holding you both for the first time was a moment I’ll never forget, you will forever be my babies.

When we learned that you were sick our entire lives changed but our love for you never will.

I still hope for you to be happy, even if you can’t be healthy. I still dream of all the things you will do in your life and I will cherish every memory we will make together.

I will give you all that I am for the rest of your days and will fight to give you the best life possible.

I sometimes worry for the days when I can no longer carry you in my arms or lift you. When you grow your equipment will too. I worry about how I will be able to care for you and help you experience the world. In these moments, when the fear, sadness and worry sets in, I remind myself we are not alone. We are not alone now and we never will be.

We have each other and we have Very Special Kids. They will help all of us, when we need, to cherish each other and live our lives each day to the best we can.

I love you now, always and forever,


Four year old twins Damien and Dominic were both diagnosed with the same rare genetic life-threatening condition, SMA1 – Spinal Muscular Atrophy. This illness will ultimately cause their tiny bodies to deteriorate to the point where they cannot walk, sit up or breathe on their own.

If you would like help care for Dominic and Damien, please donate today.

Donate here

Your donation will be put to immediate use to provide free of charge respite, family support and end of life care.