The priceless gift of gene therapy – Day 4 in Milan

We woke to another gorgeous day here in Italy and somehow the sunshine seems to make everything better.

One thing we have always known, is Eli does NOT like the EEG! Thankfully he was tired so it made it easier to keep his eyes closed. I think the time change is hitting him as it was 2 am before he fell asleep. All of the sudden the memories come rushing back … the sleepless nights filled with laughter and snuggling, and the same question asked a million times “What time is it at home?” Some things never change no matter how old they are.

Since today was Eli’s day to spend at the hospital, Ella was home with Hut. I thought for sure she would make him shop now that she is older and much more interested in those types of things. I was right, they went shopping!

They went to City Life which is a new residential, commercial and business district in Milan. Of course they had a great time!

We went from the EEG to the psychologist for a two hour evaluation. It definitely takes a toll on him mentally but he pushed through like a trooper.

We quickly went to the cardiologist after that and it was something I was eager for. Eli has had some edema in his legs the last year, so we are hoping it is just from not moving as much as he used to.

We had about a half hour to eat before his next appointment, sooo off to get, you guessed it, pizza!!

Our last visit for the day was to the dermatologist. I noticed a mole that seemed to change over the last year on the back of his leg, so of course they set up an appointment to get it checked out. It was amazing to see how they check your moles here because it is so different than I have seen at any dermatologist back home. They put a bit of gel on each spot they were checking and used a gun type magnifier pressed up against it, which then projected it to a large computer screen so the dr could get a good look. All of them seemed good and then he checked the one I was concerned about. He took his time, explaining some differences in this one, and would like to do more tests tomorrow to see if we should get a biopsy or not. I pray it is nothing, but I am grateful to have it checked out. There is a bit of a blue hue to it, which could be normal or the start of something not so good. The technology is amazing to say the least!

I don’t know how to describe the rest of our day because there are simply no words.

Two days ago I got a message from a connection on LinkedIn who works at AGC Biologics. He saw that we were in Milan and invited us to come to their location to see where all the magic of gene therapy for MLD (along with other diseases as well) happens! We were beyond honored and excited to have this opportunity!

I lay here tonight still unable to express what it meant to see where Eli and Ella’s cells were taken to be genetically fixed. We were given the tour of all tours and learned the gene therapy process from start to finish. The most incredible part was meeting two people who were actually the ones that handled Eli and Ella’s cells ten years ago, genetically changing them, giving them the opportunity of a second chance at life.

You couldn’t possibly understand, just as I can’t possibly express what this opportunity meant to us. They don’t get to see the results of their work, but today they did, and I don’t think there was a dry eye in the room.

Words can’t possibly do this experience justice tonight, so I will sleep on it, wait for the pictures that were taken today and thank God for these amazing and dedicated individuals who have given us this priceless gift of more time with Eli and Ella.


~ by Rebecca on April 20, 2023.

3 Responses to “The priceless gift of gene therapy – Day 4 in Milan”

  1. Becky I can only imagine that moment when those two people got to witness the results of what they did 10 years ago. What a gift to them as well as you all! What full hearts you must all have!

    Praying the results of Eli’s mole turns out to be nothing serious. He’s undergone enough.

    Hugs to you all! You all are a blessing.

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