Yesterday it hit me. The enormity of what Keira is about to go through tomorrow. And how it wouldn’t have been possible without Livvy going through this first. She truly is the hero of Keira’s story. If only hers could have a different ending…we can only hope.
I usually power through each day, not focusing on the surgeries or the tests or the bloodwork and the medicines but the end result; Keira one day running, talking, going to school, being sassy to her parents, having pool parties in the summer and stealing her sister’s clothes. It is always eye on the prize.
However, I am usually too busy in the moment to really think about it. But last night it snuck up on me.
Keira is one of only 31 children in the world to receive this treatment. The process by which they make this happen is incredible. The fact that it’s even possible, and that it really works? Even more so.
While there are no guarantees, we have SO much hope based on everything we have seen.
At first I thought calling her gene therapy day her “rebirthday” was a little silly but it’s just accurate. Friday, October 2, 2020 will be the start of her new life. The life she should have had originally. The life that will promise all the things we normally take for granted every second of every day. The life she will live for not only herself but for Livvy as well.
I’ve said it many times before but every day of our lives since hearing Livvy’s diagnosis initially has been unreal (and it got even more unreal from that point forward) but this day may take the cake. I guess we’ll make it a “rebirthday” cake. 😊❤🎂
The Riley's Road to Italy 
What a great day – rebirth day and on her Great Aunt Jackie’s birthday – I pray daily that this precious girl continues healing and will move into a fantastic life leaving all of this behind as a memory- Our precious sweet Livvy I pray every day they can find a cure for her as well – stay strong and there is a light at the end of this tunnel – love you all❤️😘❤️😘❤️
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Everyday you reveal a new insight, your are an amazing family and such a stong young women and mother.. continue to fund strength in our support and prayers for your family…prayers everyday.
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I am sorry i ment find strength…
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Kendra you are so right in all your saying and Livvy is our hero and always will be. This rebirthday is the most wonderful one ever, its all so amazing. Keira is a special little girl, her attitude and love for the nurses, her smiles with needles in her….. is more than I can imagine!! Your strength through all this is wonderful Kendra, the prize is what we are looking for and its huge!!! Your Mom, Mike and Dave are amazing as well, doing so many things for Livvy and Eva,, holding up the fort as they say, God Bless all of you. Sending love and prayers Uncle Jim and Aunt Judy
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Reading this with both tears and so much gratitude. ❤️
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Same! 😭❤🙏
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Kendra, my boys go to Summit (Sawyer 1st grade and Wyatt in 3rd grade) and we are all praying for you and your family. This is a GREAT re-birthday and please know everyone back here in Phoenix and at Summit have you and your family in our prayers!!!! I love reading your updates (even though we have never met) I feel like I know you and your family now. It helps all of us back home truly understand what you and your family are going through. This is such an exciting day for Keira and my hope is that one day there is a trial that can help Livvy too. Big hugs from so many people you don’t know…but that are praying for all of you!!!! PS – Italy is our absolutely favorite destination….and I love that the amazing Italian doctors are helping you and your family and conducting this trial. They are so focused on family so we all know they will take good care of y’all 🙂
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Thank you so muh for your kind words, prayers and support, Smila! We appreciate it more than you know! We are so happy to hear from more of our Summit family and hope to meet you all once we are back home in AZ and COVID is (hopefully) behind us! Our oldest, Eva, who is in Kinder at Summit is super excited for Keira to one day go to school with her. 😊 And the Italian team of doctors and nurses have been so wonderful! We are hoping to see more of the country as well once we are out of isolation with Keira, or at least on one of our visits for her check ups. Even just our little corner of Milan has been such a great stay! Thank you again for reaching out and keeping us in your prayers! 🤗❤🙏 Hope to chat more soon! – Kendra
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Kendra, I can’t tell you how full my heart is for you all. Years ago when we first heard about the research being done on large animal models that eventually turned into the gene therapy trial and now to where we are today, it was all a dream. Working with the researchers along the way and praying this therapy would bring hope and renewal to future children diagnosed with MLD has been incredible but to see it working is beyond words. We can’t wait till the day when there won’t be older siblings like Livvy that can’t access therapy because they will be diagnosed at birth with MLD Newborn Screening. That is our new dream and what MLD Foundation is working toward. I am so happy Keira has done so well with the chemo and we celebrate with you as you get ready for her re-birthday! Our hearts, prayers and thoughts are with you all! Big HUGS!
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I’m always so in awe of the work you do for MLD families! We are so grateful to have your guidance and support! Thank you! And if there is anything I can do to help further awareness of the newborn screening once we are back home, I am more than happy to do so! Big hugs right back to you from all of us in Italy!! ❤❤❤❤❤
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