Support the Blakeslee Family's Healing Journey

“Beginnings are usually scary, and endings are usually sad, but it’s everything in between that makes it all worth living.”

— Bob Marley

Over the last few months, I have followed Talina’s posts very closely, as I am sure all of you have as well. I found myself checking for updates each night, hoping to hear happy news of Rowie’s extubation. As I devoured Talina’s words , the tears would often run down my face. And when things were quiet, I knew all was not well in the PICU.

We didn’t know each other all that well in the traditional sense, but our families walked a very similar and difficult path. We found comfort sharing deep and personal thoughts after realizing both of our sons were diagnosed with extremely rare, progressive forms of mitochondrial disease. Rowan and Milo both inherited two copies of mutated genes — Rowan’s IBA57 and Milo’s AFG3L2 — that are essential components of the human machine, supplying energy to the major organs of our bodies. Their prognoses were bleak but unclear, so you try to live in a world balancing your hopes and fears by the minute.

Daily living is hard. It’s hard for our baby boys. It’s hard for our marriages. It’s hard for the siblings. It’s hard for our families. It’s really, really hard. And what’s even harder is letting go of your baby. Saying goodbye, and then waking up the next morning trying to go on living. Going to work. Cooking meals. Moving forward without leaving any precious memories of your child behind. Telling your other children that “every little thing is gonna be alright.”

With the recent loss of Rowan, the Blakeslee family has gone through the unimaginable. And although there is nothing that can truly ease that pain, I think it would be nice if we can give them an opportunity to celebrate Rowie together as a family.

As the parent of a medically fragile child, the moments for time together as a family are few and far between, while travel is next to impossible. Rowie loved Bob Marley and forever changed the meaning of those songs for me. I will never listen to another Marley song without thinking of his beautiful smile.

Those songs brought comfort to Rowie through the most difficult times and I thought we could bring comfort to the Blakeslee family by raising funds towards a family trip.

Perhaps they could travel to Jamaica, and spread Rowie’s ashes in the clear blue waters of the Caribbean while listening to the reggae sounds in the distant breeze. But honestly, what they choose to do with any donation is entirely up to them. And if you prefer to send a meal, here is a link to their meal train website .

Either way, I hope that it gives them the opportunity to rise up in the morning, smile with the rising sun, listen to the three little birds outside their doorstep, send a message to Rowie, and know that everything is gonna alright.

Love to all,

Rita and Milo

“Ya see, in life I know there's lots of grief, But your love is my relief” — Bob Marley