Consider Pure Joy

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2-3

About

My name is Kyle Nichols and this is our journey with our daughter Reese.


5 responses to “About

  1. Angela Byun & Sean Kim says:

    Hello,
    First of all, Reese is beautiful!!! So precious!
    We have a daughter (Elliana) who is 7 months old and she has xq28 duplication as well.
    We would live to share our story with you and get to know your family too!
    My email is yi.k.byun@gmail.com and my uusband’s email is seanshkim@gmail.com
    Hope to hear back from you!

  2. Erica Smith says:

    Hi my name is Erica. I was looking for info on xq28 online and came across your daughters story. She is beautiful 🙂 I have an 8 month old daughter who was recently diagnosed with xq28 and the drs haven’t been able to offer me much information about it. I was wondering if you could help me understand it a little better and what we can expect. My email is ericamsmith08@yahoo.com any information would be greatly appreciated. I know each child is affected differently but I would just like to understand it better. Advice is also welcome. Thank you for your time and god bless u and ur family.

  3. Cory Marie Frederick says:

    Hi! I wanted to introduce myself. I am a mom here in PA with a little boy, Robby, who has Xq28 chromosomal duplication. I also have the same duplication. Have you or your wife been tested? We see doctors at Kennedy Krieger Institute and John Hopkins. I would love to connect with your wife and you. My son is going to be 9 in a few days and it is absolutely a miracle because he wasn’t suppose to make it. I was wondering if your daughter has any neurological deficits such as seizures? That has been our biggest issue with this diagnosis. Although the docs tell us they don’t know all the implications of the duplication yet. You can find me on Facebook or you can email me as well at robbysmom826@gmail.com
    Hope to hear from you and you will be in our prayers!

  4. Katie Moe says:

    Greetings Nichols Family!

    I stumbled upon your blog after ‘meeting’ Elizabeth online via MECP2. I have so many words and I do not know where to begin. Our journey with our daughter, Taylor, began at her nd her fraternal twin sister’s 9 month check up where we were refered to PT because she was kind of wobbly when sitting up. We did not see a neurologist until she was three years old and even then the words, genetic testing, never came up. She was delayed but eventually reached a milestone. So we just kept pushing and pushing her forward hanging our hats on the fact that she never showed regression, we relied on it. She is now a six year old girl who has great challenges…but she can ride a horse, she is learning to swim, she was loves ballet and even performed on stage. She cannot truly write her name, she cannot ride a bike and still can’t really jump. She is the light of our family and has the most natural sense of humor and the most conviction. I loved reading your blog as it resonated on several levels. We are a rare gem, the girl mecp2 families, and I know we can shine right alongside our courageous and living girls! Thanks for being so candid and honest.

    • Elizabeth says:

      Sounds like you have a princess just like Reese! Thanks for sharing your special gem with us! Love-The Nichols’

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