I absolutely cannot believe it has been (almost) one year since Keira received her life-saving gene therapy treatment in Italy (her official re-birthday date is October 2, 2020). Our time in Milan seems like a lifetime ago.

Yet here we sit at Phoenix Children’s Hospital for her 1-year post gene therapy check up!

And I am so happy to say I am not worried about her results one bit! She has been running, climbing and talking more and more each day. She is even advanced for her age in some ways and we are in awe of her every day.

While we normally would need to return to Milan for her follow ups, because of COVID the doctors there managed to figure out a way to do the testing here locally and send back her most important blood work on dry ice overnight to Ospedale San Raffaelle. While I love Italy and have no problem with returning, it is especially nice to stay home for this check up so we do not have to leave Livvy who continues to worsen.

As for the check up itself, we have a busy two weeks ahead which will include the following appointments:

• Bloodwork
• Ultrasounds (abdomen and thyroid)
• MRI
• Echocardiogram
• EEG
• Appointments with Pulmonary, Pathology and Neurology

There might be one more I’m forgetting but needless to say, there are a lot of things they will be looking at to ensure she is developing normally.

The one thing in particular which can only be checked in Italy is one of the results from her bloodwork which looks for any ARSA antibodies. The ARSA enzyme is something her body could not create prior to gene therapy. And now that is does her body began trying to fight it because it wasn’t used to it. However, the antibodies have only gone down in numbers since and hopefully at this point will be completely gone. Keep your fingers crossed for us there!

We will be sure to keep everyone updated once we receive her results. Thank you for your continued prayers, love and support! It means the world! ❤