The journey of many miles, tears and smiles – Thank you Milan

This is hard to write, because it’s hard to believe that when we wake up in a few short hours that our journey in Milan is coming to an end. A journey that has spanned thousands of miles of traveling and a decade of living as a parent of two children with MLD.

When Eli and Ella were first diagnosed with MLD, we were not given much hope, really none. We were told that they might live to see their teen years, and if we were lucky, maybe 20. That is what is typical with juvenile MLD, because it slowly robs you of the ability to walk, talk, eat and so on, until the body simply can’t fight anymore.

That is NOT how our story unfolded over the last ten years thankfully, and we owe that course change to gene therapy and the clinical trial here in Italy.

Today we said our goodbyes here in Italy, we had our discharge meeting and we prepared for our flight home in the morning. We shed some tears and we thanked those that we could, but the list is long and the words seem to be insufficient.

We started our day with breakfast, followed by a quick visit from our friend Rose who we have known since the beginning. She was there at the beginning when we felt isolated and alone. She took us to the grocery store, the mall and helped us with anything else that we needed. She was a true angel and we will never forget the feelings of ease that she brought to us during the early visits in Milan.

A visit to Milan would not be the same without going the cathedral in Duomo, so today was the day before we met the doctors for our discharge.

It gets me every single time that I lay my eyes on this church and today was no different.

We did not go in the church today but we made sure we said our prayers of thanks for the last ten years and all the blessings in our life.

We had our last lunch overlooking the cathedral and it didn’t disappoint!

Off to the hospital we went after some shopping and taking it all in.

We had our discharge meeting with the doctors and it went well. We learned that Eli should get his gallbladder out, and he will be getting a mole removed as well. We will follow up with our doctors at CHOP to make some more follow up appointments to keep an eye on a couple of things.

We don’t have the levels of ARSA (the missing enzyme that causes MLD) back yet, as that is ongoing but we should in a couple of months. Aside from that, it seems as though the MRI is stable as is the nerve conduction, which are the two biggest things that we are always eager to see the results of.

It was emotional saying goodbye but not as bad as I thought. We are ready to go home but also so grateful for the opportunity to be here.

We went back to the residence to finish packing and then had some American dinner with out wonderful friends Erica and her family.

I hope we can see them all again in America one summer! The girls had a wonderful time together and the laughter was plentiful with all of them. It was a true joy to have this time together and we will cherish the memories!

From start to finish, we thank you Milan for the gift of life!!


~ by Rebecca on April 28, 2023.

One Response to “The journey of many miles, tears and smiles – Thank you Milan”

  1. Becky this made me cry. I’m so happy that your kids story had a different ending than most. I remember meeting you all right after Eli’s diagnosis and attending “The Wonderland of Wishes” a community event put on by Jessica Reigner and Denise Wiggins, two total strangers with big hearts, to raise money for you all to go to Milan. Your family has been so blessed along this journey but I know it hasn’t been an easy one and to see this closing of a chapter 10 years later with such amazing results warms my heart. While trips to Milan maybe coming to an end I know there are more chapters ahead for Eli and Ella. They and your family will continue to have our prayers for continued good results through the years ahead. You all are a blessing to the whole MLD community and Warriors Indeed! Hugs!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: