Rylea Barlett's Prepared Speech for Hope Summit 2010
Saturday, January 23, 2010
By: Rylea Barlett

NOTE: This is the prepared speech 8-year-old Rylea Barlett gave January 23, 2010, at Hope Summit 2010 at Sheraton St. Louis City Center.

Good morning everyone! It is such a huge honor to be here today. I have never given a speech quite like this -- well actually, I haven’t ever given a speech. So I am a little nervous, but please bear with me.

It is great to be here with a group of people that support stem cell research, because it is something that is extremely important to me. I would like to take a few minutes to tell you a little bit about myself and why I am here.

As they mentioned, my name is Rylea Barlett, and I am 8 years old. I live in Webb City, which is down in southwest Missouri. I was born September 3, 2001, in Joplin, Missouri. My dear mom was in labor for 24½ hours, which was a little hard on me but maybe a little worse for her.

When I finally did make my appearance into this world I had a few minor problems, like I didn’t want to eat, my eyes were rolling back in my head and I was very tired. The nurses all kept telling my mom that it was because we had gone through such a long labor and I must have been worn out.

But then something else happened: I quit breathing!  My mom had to yell for the nurses; they came in and took me straight to the nursery. I started breathing again, but they decided to check my blood sugar, and it was 12. They told my mom that if I were an adult I would have been in a diabetic coma. After a few little IVs they were able to get my blood sugar back to normal, and I haven’t had any more diabetic issues since then.

However, this wasn’t the end of my medical problems. In December of that same year I was taken to the emergency room and admitted to the hospital for RSV, which is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups. So I was in the hospital for several days while the doctors were trying to make me better.

But then my pediatrician noticed something else: my eyes weren’t following objects, or tracking as they called it. They tried to get a pediatric ophthalmologist to come in, but it was New Year’s Eve and the only one in the Joplin area was out of town on vacation. They made an appointment for my mom to take me into her office on January 18, 2002. My mom kept watching me and knew something wasn’t quite right but stayed positive thinking it was probably just a lazy eye or something simple that could be fixed.

When we did finally go to the appointment, the doctor dilated my pupils so she could see inside my eyes and behind them too. She left the office for a few minutes and came back only to tell my mom that I had optic nerve hypoplasia and there was nothing they would be able to do -- I WOULD NEVER SEE -- and then she walked out of the room. My mom loaded me up and drove all the way across town to our church so she could pray over me with the ministers that were there. 

That day was the start of my mom having to become stronger than she ever knew she could be, in many ways. She took me to Kansas City for a second opinion, to another eye doctor in Joplin for a third opinion and finally to an eye doctor in Tulsa, Oklahoma, for a fourth opinion. They all said the same thing about my eyes: that I had NO vision and that there was not anything they would be able to do to change it. But there were a couple of those doctors that told my mom they would be praying for us, and the doctor in Tulsa even prayed over me before we left his office.

From that point my mom did everything she could to make sure I had all the help I would need from a physical therapist, an occupational therapist, speech therapist and even an awesome man who still does my orientation and mobility therapy. I began talking in complete sentences when I was nine months old, and sometimes that really freaked my mom out -- but she knew I wasn’t a typical baby.

When I was three I started attending the early education program in our school district, and while it was hard for me to adjust to being away from my mom for those few hours a day I know she had a hard time letting go of me too. When I started my second year there my mom made sure I had a full-time aide with me at all times. My aide’s name is Ms. Forsythe, and she is still with me every day at school making sure every assignment is brailed and keeping me supplied with books to read because reading is my very favorite thing to do.

So somewhere in the middle of all of that my mom heard about a lot of debates over something known as Amendment 2 in 2006. She looked into it to find out why people were talking so much about it. That is when we discovered if there was ever going to be a cure for my blindness our best possibility would be through stem cells. My mom did a lot of volunteer work for the Missouri Coalition for Lifesaving Cures in 2006, like putting out yard signs and doing news stories so people could see the impact this kind of research could have, especially for someone like me. I got to meet Claire McCaskill on her campaign tour through Joplin and was even able to talk to her about voting yes on Amendment 2.  I went to the polls to vote with my mom that year and had to learn about electioneering because I wanted to get everyone that was in the voting line to vote yes on Amendment 2, like we were there to do.  Apparently that is illegal, so I tried to keep my opinion to myself but that was hard, especially since I was only 5!

When I woke up the next morning I asked my mom if enough people voted the right way to keep stem cell research legal in Missouri, she said YES! It was a very happy day for me and the rest of our family and friends too!

After the election was over my mom kept doing more research and found a facility that was willing to try stem cell transplants on me. So I became the first person in the world to be treated for optic nerve hypoplasia. I had five stem cell transplants in July of 2007 and was able to see light for the first time in my life. It was a little strange and exciting at the same time. I kept walking up to the television to see the flashing lights because I had always been a little afraid of getting too close to the television because I thought the people that I heard were right there inside of the TV. If I strained real hard I could see a very little bit, but that led to me having a lot of headaches because I just didn’t have enough usable vision, so I have chosen to not use vision because I have accepted being blind and actually kind of enjoy being different from my friends and family. But at the same time there have now been about 200 kids that have had the same treatment, and they have all had improvements -- most of them much more significant than mine since I couldn’t even see light.

This is why this kind of research is SOOOO important to me. If I didn’t have such a persistent mom we wouldn’t know about the possibility of me or all of the other visually impaired children out there actually having vision. Now it becomes their choice whether or not they want to see instead of their never being a chance. There is hope out there for many diseases, illnesses and injuries, and we have to continue doing what we can to protect this hope for all Missourians, no matter how old we are. So please join me, my mom and over 65,000 other Missourians to help educate and spread the word, to those who aren’t already members so they can join the Coalition and protect hope in Missouri.

Thank You!

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