Brand New Day

Having less than 24 hours to process the events of yesterday, I must say I feel like I am dreaming. Like there is this energy inside me that just doesn’t know where to go or what to do, like I want to have a parade with marching bands and play New Zealand and Australian music, with a little Texas bootstepping music thrown in. I look at the cars driving by and people walking and how can it be so, so, so the same when the world as I knew it 1 minute before 648 pm 11/11/14 changed one minute later.

It all seems so surreal. I can see, in my mind, a progression from treatment, to talking, to learning, to, to…EVERYTHING-knowing what she loves, a job? in her future, advanced learning in her future? And more than that, exploring beyond the confines of “Holland”. Oh, wouldn’t I just LOVE to take her to Ireland, she would love the music and the brogues. Wouldn’t I just LOVE to hear her read, I have this energy within me that is squeaking out, because if it didn’t I would completely explode.

Katelin is right there with me, barely able to hold in her excitement, which came out as “cookie, cookie, cookie” for about an hour yesterday and squeals of delight.

I don’t know what road or how long the road is between now and she gets NNZ again, but it’s going to be way shorter than it seemed a year ago.

My many, many thanks to those who sacrificed to get their children to this study.

My eternal gratitude to Neuren and it’s affiliates, researchers, stock holders and anyone else who had a hand in this monumental day.

My appreciation to the fore thought of the Board of IRSF to support this trial and the research behind it, and to the many volunteers that worked tirelessly to bring it to fruition.

But, I also want to say, it’s a bit bittersweet as we have watched families lose their girls this year, knowing that a treatment and cure, even though almost within reach, is not close enough to save others who will leave us before it is.

Photo taken by : Sias van Schalkwyk

Photo taken by :
Sias van Schalkwyk

And I want to say, I feel like my daughter has just been handed to me, swaddled in the cloth of research, born once again, with a promise of becoming who she was truly meant to be, with milestones to reach that will be attainable, surpassable, and blown out of the water.

It is indeed a brand new day, and the sunrise is reaching all the way from Australia to this Eastern Shore and the horizon holds more promise than ever before.

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6 Responses to Brand New Day

  1. Erica says:

    Wow! Thank you!!!! Thank katelin from my 8 year old Avery! Yes-swaddled in the cloth of research!!!

  2. Kim Reynolds says:

    Just when I thought the nervous, excited tears had stopped, I read this 🙂 Thank YOU, your daughter and all the other parents and girls for giving us sooo much hope! ❤ Kim and Karlie (9)

    • melelllan says:

      We went through it and are still nervous and excited about the coming possibilities.! We’re all in this together. My greatest hope if for the little ones and I think Katie knows exactly how what she went through will benefit others. I can’t wait to hear what it felt like for her,

  3. Debbie Patton says:

    You expressed this so beautifully. Thanks for sharing. So exciting! I dream of Gracie talking to me, even just a few words would be so amazing. Blessings to you and Katelin. Debbie

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