Good morning, Chairwoman Gonzales, Vice Chair Huffman, Ranking Member Antonio and members of the Health and Aging Committee.Thank you for giving me the opportunity to testify in support of Senate Bill 117, which would designate October as Rett Syndrome Awareness Month.
Brynn is 8 years old and has been "living" with Rett syndrome for 6 years. Rett syndrome is a neurological disorder that primarily affects girls. Most communicate with their eyes as hand function diminishes with time. You see Brynn was born with Rett Syndrome but symptoms didn't appear until she was two. Brynn could talk, feed herself, drink from a cup by herself and play with toys.Soon after Brynn was diagnosed with Rett syndrome on April 27, 2009, she lost all of her skills. Brynn could no longer feed herself, pick up a cup to get a drink, play with toys independently or even say I love you.Rett Syndrome stole the skills she had developed over her first two years of life. Brynn is such a fighter and despite all of the struggles she lives with such as seizures, GI issues, tremors, scoliosis and the many surgeries she has had to endure, she doesn't let Rett syndrome define her.
I believe with my whole heart that if Brynn could tell you about how she feels about Rett Syndrome, this is what she would say, “I do not let Rett Syndrome discourage me from being happy or following my heart and my dreams. Rett Syndrome is not who I am. It is only a part of me, but not all of me.” As Brynn's mom and an advocate for Rett Syndrome Awareness I am simply wanting and hoping to make a true difference for those living with Rett Syndrome.I know personally how challenging everyday life can be and how important it is to have compassionate support for others.
I’d like for you to take a minute to imagine what your life would be like if you had Rett syndrome, and very few other people knew anything about your condition.I want you to think about how it would feel if you couldn't walk, communicate, or just simply use your hands. You would probably want others to love and support you through all of the hardships you face, to believe in you, to encourage you, and stand beside you on your journey.That is why I am standing before you, today, on behalf of Girl Power 2 Cure, and on behalf of Brynn.
Brynn needed that support when the diagnosis of Rett Syndrome was made official and so did I.I already knew in my heart, but to get the official diagnosis still hurts. Was I heartbroken?ABSOLUTELY! All of the hopes and dreams you have for your child will now be...different.I didn't let this diagnosis take over our family.I made sure that we were and are going to make a difference.I connected with Girl Power 2 Cure the day after Brynn’s diagnosis.Girl Power 2 Cure gave me the resources I needed, to make sure I was doing the right things for her physically, medically, and emotionally. Not only for her, but for myself also.You see, Rett Syndrome is hard on us parents as well.
Your support will further our efforts with Rett Syndrome Awareness.We’re not advocating simply for ourselves. We’re advocating for the others to come, who will be diagnosed with Rett Syndrome and others who will be misdiagnosed for years.We simply do not want these families and most importantly the girls to be alone.
We would appreciate your support to help those who suffer from Rett Syndrome, achieve a better life, achieve their hopes and dreams, and achieve a quality of life equal to that of their peers.It is our hope that you will join us in letting the State of Ohio know about this devastating neurological disorder by supporting S.B. 117 as I will also continue to advocate for those who cannot speak for themselves, because I know that together we can make a difference in their lives. Thank you for your consideration and support on this issue which means so much to us.