Kinslee's Page

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Kinslee's Story

Kinslee was born after a pretty normal pregnancy. My mothers intuition kept telling me something wasn't right during regnancy, something was wrong. After multiple ultrasounds the doctors assured me she was ok. I kept feeling like I was going to loose this baby.
I developed PUPPS when I was 5 months pregnant. Other than that, it was a pretty uneventful pregnancy.
I labored at home for 5 days with unpredictable contractions that never were consistent. I was finally sent it to be induced on the 5th day.
A normal delivery came but the second they placed my girl on my belly, I knew something was wrong. She wasn't ok. Why is she that color, why is her eye turned, why isn't she crying? The doctors once again assured me she was ok, and to not worry.
Each and every well-child check I questioned her pediatrician on her wellness and missing all her milestones. He just kept saying she was fine, quit worrying, she will catch up. By 12 months and my girl wasn't even attempting to crawl and he told me the same thing, we made the decision to find a new doctor. I also took action and got her an appointment with first steps.
Then I had a dream. A dream about a female doctor with blonde hair that told us Kinslee had CP. I had never met this doctor & I knew nothing about CP. I researched CP and kinda fell apart. Some of it describes her but some of it doesn't.
I met with my OBGYN and she recommended a new pediatrician. I called that day and made her 15 month well child visit with this new doctor.
This doctor walked in and I lost control. She was the dr in my dream, how can this be. I told the dr I had a dream and she was in it. She did a full exam and I handed her a paper about our sweet girl with everything happening and not happening for her.
She said she wanted to send us to specialists and that she thought it was CP. Mind you, I told this dr I couldnt tell her about my dream, I just want to hear what you have to say. She was in my dream 3 months ago...it was deja vu. Her words broke my heart and relived me at the same time. Everyone up until this point agreed with her old ped and told me to "quit trying to find things wrong" I honestly was starting to loose my mind. And now, a medical professional AGREES with me. FINALLY--I AM NOT CRAZY!!!
The next year and a half was a whirl wind of medical appointments and tests. Her neurologist didn't agree with my research.
Dec 2015 I found a blog from another momma about her daughter with Retts. I reached out to her, explained Kinslee and she recommended I request testing for Retts. I did, her neurologist told me she didn't fit the physical appearance of Retts and testing wasn't necessary. Now what? We had already been tested for Angelmans(my first suspicion bc she is always so happy and loves bath). They tested for a slu of other things that could be it. They all came back negative. Her neuro dr finally diagnosed her with autism. We knew that wasnt the answer, we knew it was more. So we pushed and pushed for more testing. I researched myself and called the dr to demand a full genome exome test. The dr told me it wasnt necessary, she had autism, please just continue on with therapy. I didnt stop. I called weekly--drove this DR crazy! She finally agreed to the test.
We went for the testing May 27. Were told it would take 4-6 months to get results back.

July 13, 2016 @4:45 my phone rang, it was the hospital. I expected it to just be a confirmation call for an appt we had the following week.

Mrs Kinder, this is your genetic counselor, do you have a minute? "sure, yes, absolutely. I didnt expect to hear from you until around Christmas!"
We have the results back. Kinslee has a mutation of the MECP2 gene - I lost it, I knew exactly what that meant. I don't remember much more, everything started spinning, I was out of control crying, I couldn't make sense of this. How can this be? She said to me, "I expected your reaction to be just this, any amazing parent is, I didn't even have to tell you what this meant, you already know Kinslee has Rett Syndrome" The world stood still...these words ripped through me and hurt me more than anything that has ever happened to me. I know what Rett is. I researched it intensely. We prayed so hard for the results to not come back as Retts. But it did. And here we are. Fighting every second for our girl to get the help she needs. We will never back down from this fight, I have consumed myself into learning all there is to learn about Retts. They will cure this, she will have a better quality of life than what the textbooks and doctors say. She will win this!