Keira’s 1-Year Post GT Results

While we are still waiting for one last result (regarding any ARSA antibodies), I couldn’t think of better news to share to end the year: all of Keira’s other testing from her 1-year post gene therapy appointment have come back great!!

We are beyond overjoyed and so releived to know her MRI looks perfect, EEG was normal, her audio/visual nerve testing was “glorious” said the doctor, and all other bloodwork is in normal range.

The last test she had was for her neuro psych evaluation, which we were not worried about at all given her speech language pathologist’s recent assessment. But there is always that what if…

Dave had taken her to that appointment that morning (because only one parent is allowed still due to covid) and we were both so busy with work and the girls’ schedules that day that I didn’t see him until near dinnertime. Finally, he gave me the results: “She was above average in all categories…except communication.” I looked at him shocked because she is speaking so well and then he finished…”in which she was extraordinarily above average!” 😁👏🏻🎉

PHEW!! So much relief just washed over me.

We are so incredibly grateful that her body has accepted this treatment and she is doing so well.

At this stage Livvy was already losing her abilities to walk and talk so it truly is a miracle and a joy to see Keira developing and doing new things every day.

We are in awe of Keira every day and so grateful Livvy has been her guardian angel on earth.

Words cannot express our gratitude to each and every one of you who has been a part of our family’s journey to help Keira have the chance at the normal life that was taken from Livvy due to this terrible disease.

We wish each and every one of you a Happy New Year!

9 thoughts on “Keira’s 1-Year Post GT Results

  1. What a princess Keira is!!! We are so thankful right along with you, that she is doing so well, a miracle indeed. We wish all of you a Happy New Year too, but knowing Livvy is getting worse, we just hope and pray for many good moments and memories..Sending love and prayers Uncle Jim and Aunt Judy

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  2. Wonderful news. My friend Joanne B. Keeps me updated. I worked at Excel and knew your father. Wishing you only the best New Year.

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  3. I am so happy and excited for you all that Keira is doing so well! The test results are a successful a relief I am certain. My heart hurts however for sweet Livvy. I continue to pray for your family and each one of you individually. May 2022 be a good year for you all. God Bless!

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  4. Prayers certainly have been answered for the Rielly family for both Keira, and for Livvy. I wish I knew exactly what to pray for but am confident He is watching over all three of your girls!

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  5. Happy New year to your whole family! It’s so awesome to see how gene therapy has made a difference in a child’s life. I remember sitting in a meeting when the researchers, Biffi and Sessa, first presented their work on large animals and the skepticism in the room among other researchers was huge. We didn’t agree and believed all avenues should be explored and supported. So glad MLD Foundation supported these researchers and trials and have the opportunity to witness the life changing difference it has made in Kiera’s life and the life of children to come. Hugs to your whole family!

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    1. I had no idea you were involved from the very beginning – how cool! Something that people tell me all the time that i am now goint to tell you: you really need to write a book! To be a part of such great change for so many is just beyond inspiring.

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