[Congressional Record Volume 147, Number 71 (Tuesday, May 22, 2001)]
[Extensions of Remarks]
[Pages E889-E890]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        THE STORY OF EMILY ROSS

                                 ______
                                 

                        HON. STEVE C. LaTOURETTE

                                of ohio

                    in the house of representatives

                         Tuesday, May 22, 2001

  Mr. LaTOURETTE. Mr. Speaker, I rise today to honor a courageous young 
woman from Westlake, OH, who recently contacted me to share her story 
and the need for increased funding for Muscular Dystrophy research. 
Emily, a sophomore at Westlake High School, has Friedreich's Ataxia, 
one of the many neuromuscular diseases that fall under the umbrella of 
Muscular Dystrophy. Emily was diagnosed when she was five.
  Emily's parents, Charlie and Carolyn Ross, shared with me two 
articles Emily wrote about her daily struggle with Muscular Dystrophy 
and how she is overcoming the challenges the disease places before her. 
The first was written when Emily was in eighth grade, ``A Day in the 
Life of Emily Ross.'' The second, ``Onward and Outward!'' was published 
in the April 2001 edition of The Bay Press. I am submitting the 
writings of Emily Ross into the Congressional Record so they will 
become a part of the official record of the U.S. House of 
Representatives.
  Mr. Speaker, Emily believes that God chose her to have Muscular 
Dystrophy because he needed someone to help find a cure. I applaud her 
courage and grace, and hope that others will be as touched by her story 
as I was.

                    A Day In The Life Of Emily Ross

                            (By Emily Ross)

       When I wake up in the morning, I shut off my alarm and 
     begin my day by stopping to think how I am going to walk 
     across my bedroom floor. Attempting to go into the bathroom 
     is scary because my feet are stiff, my balance is terrible 
     and I manage to bang into every piece of furniture in my 
     bedroom! I get downstairs to the kitchen for breakfast by 
     scooting down on my behind step by step. Going into the 
     kitchen for breakfast I have trouble opening the peanut 
     butter jar, pouring a glass of milk or getting any cereal 
     into my mouth because my hands shake. I hope my teeth are 
     clean because I cannot squeeze the toothpaste. Buttons, 
     zippers and socks are a challenge. I'm already tired but off 
     to school I go with my Mom and my dog, Oats.
       At school, my Mom helps me to the door because my feet trip 
     easily on the uneven sidewalk. I cannot open the heavy doors 
     by myself. Once inside, I hope on my battery-powered scooter 
     and go to my locker. If I'm not shaking too badly I can get 
     my combination lock opened in three tries! Headed to my first 
     class I face crowded hallways, funny looks from other kids 
     and hurtful comments like ``there goes the cripple.'' 
     Sometimes some of the kids will lie on the floor pretending 
     that I have hit them with my scooter which really hurts my 
     feelings. I'm constantly being asked to move out of the way 
     because they say my scooter takes up too much room. After 
     class I'd like a drink of water but the water fountains are 
     too high. At lunchtime I never buy a school lunch because I 
     cannot reach the food on the shelves or get my scooter 
     through the narrow gate. I tried to walk through the lunch 
     line several times but everyone is pushing and I'm scared 
     I'll lose my balance. I dropped my tray once and believe me, 
     once is enough!
       It's now sixth period and I'm starting to get really tired 
     and I have two more class periods to go. The bell rings and 
     school is finally over. It's pretty tricky getting my scooter 
     down the hallway with everyone pushing and shoving their way 
     out to the buses. I finally get to my locker, hope I can get 
     it open in time so I don't miss my bus, grab my coat and 
     panic when I can't zip up my backpack. All my papers fall out 
     all over the floor. I frantically stuff them back inside my 
     backpack, park my scooter, and struggle past 800 other kids 
     waiting to catch their bus rides home. My bus finally arrives 
     and I gratefully sit down for my ride home. An aide helps me 
     up to the side door of my house and helps hold my hands 
     steady so I can aim my key in the lock and she also helps me 
     to turn the doorknob so I can get safely inside. Once inside 
     I let my backpack and coat drop on the floor and I fall onto 
     the couch where I am grateful to God that I have
       My name is Emily Ross. I am 13 years old and in the eight 
     grade. I have Friedreich's Ataxia which is one of forty 
     neuromuscular diseases listed under Muscular Dystrophy. It is 
     a hereditary degenerative nerve disease which affects the 
     hands and feet resulting in fatigue and loss of feeling and 
     balance. I was diagnosed when I was 5. I thank God allowed me 
     to have MD because he needed someone to help find a cure. 
     He's chosen me and has led me to a team of doctors that have 
     asked to take a biopsy of muscle and nerve tissue in a ``one 
     of a kind'' research program which The Muscular Dystrophy 
     Society is sponsoring. They are hoping to determine how they 
     can replace or regenerate the protein that is missing in the 
     cells of all Friedreich's patients. Even if a cure is years 
     away, this study may allow for a medicine that could help me 
     and many others to stop shaking and stop our muscles from 
     weakening anymore.
       Not all of my days are stressful because I have the love of 
     my family and many good friends who help me throughout each 
     day. My Mom, Dad and my brother, Hunter, help me squeeze the 
     toothpaste, open the peanut butter jar and button my clothes. 
     My school has allowed me to start my school day one hour 
     later than everyone else and when my friends see me coming up 
     to the door, they hold them open for me. Sometimes it's even 
     a really cute boy which makes my day start off pretty darn 
     good!!! My scooter is sometimes being used by my crazy 
     science teacher but she always comes zooming down the hall 
     just in time for me to get to English. My teachers have been 
     wonderful with kind understanding and a willingness to adapt 
     to my special needs. because of my school's support, I am a 
     straight A student. And, if my feelings are hurt by some 
     kids, I have many more good friends that support me in many 
     different ways. Sometimes I think the entire school knows my 
     locker combination because they are always helping me to open 
     it. They help me carry my books, write my lessons for me, 
     copy homework assignments, take notes off the board, stand in 
     the lunch line to get me a chicken patty sandwich and help me 
     make it through a Friday night canteen in the auditorium in 
     one piece!!! god must have really been looking out for me 
     after school because I have the oldest living bus driver in 
     the world who is late every single day. For me, this is a 
     blessing.
       I am proud to say I am going on the 8th grade Washington, 
     D.C. trip this June for four days, I plan on attending M.D. 
     Camp for the second years, I help elementary kids to read at 
     our Library's summer program and if she'll hire me again, I'd 
     like to help Mrs. Peterson at our church this summer in the 
     Family Life Ministry office.
       So I guess you could say that I'm quite a lucky girl. God 
     has blessed me with a special challenge that lets me look at 
     the world in a lot of different ways. When I grow up I hope 
     to help make the world an easier place to be for all special 
     people. Thank you for listening to me today and I hope you 
     will see people with special needs through different eyes--
     God's eyes.

                                  ____
                                  

                    [From the Bay Press, April 2001]

                          Onward and Outward!


                       an update from emily ross

                            (By Emily Ross)

       Two years ago I shared ``A Day in The Life of Emily Ross'' 
     with our congregation. I was very touched when recently many 
     of you asked how I am doing now that I am in high school and 
     faced with a new set of challenges. I'm proud to say that I 
     am doing well, accepting the challenge Heaven has asked of 
     me, Muscular Dystrophy is a silent, progressive disease, and 
     Friedreich's Ataxia, the type I have, robs me of the ability 
     to store energy in my cells. I have noticed a loss of touch 
     and hearing, as well as slurred speech over the years, but 
     I've become quite clever at managing my daily activity.
       I am now a sophomore at Westlake High School, maintaining a 
     3.2 grade average, carrying a full class schedule, and even 
     hosting a five-minute broadcast segment called ``This Week in 
     Science'' through WHBS, our school's television broadcasting 
     system. I am no longer able to walk by myself, so my new leg 
     braces, along with the use of a scooter, help me to my 
     classes. The school purchased a special locker for me that 
     opens with a magnetic key, so I no longer have to worry about 
     combination locks; they even remodeled certain areas to 
     accommodate my scooter. I have full use of the school's 
     elevator and front row seating in all of my classrooms. Some 
     teachers are compassionate and understanding, some strict and 
     unbending, but isn't that the way it is for all students? By 
     evening, my hands are usually too tired to hold a pencil, so 
     someone in my family writes my homework for me as I dictate. 
     My mom is very good at not telling me if the answer I am 
     saying is correct, she just keeps writing no matter what!
       Every year, a few students stare and whisper as I drive by 
     in my scooter, but most of the kids have know me since 
     elementary school, and I now fit in almost effortlessly. I 
     have concerns that boys will be judgmental,

[[Page E890]]

     seeing only the wheelchair and not the girl seated in it. I 
     will admit to having days filled with self-pity at not being 
     able to walk, dance, or run but they soon pass when I realize 
     all the things I am capable of and have already accomplished. 
     I actually like going to school because it's something I can 
     manage independently, and I feel comfortable surrounded by my 
     teachers and friends.
       I am a bit more cautious, though, in the world outside my 
     high school. I am trying very hard to leave the security of 
     familiar surroundings and make an attempt to be seen at more 
     school and community functions. It took me a long time to 
     learn that if people do not see you at school events, the 
     mall, or the movies (like a normal teenager), then they 
     assume that you do not wish to be included. Many teenagers 
     have never even been close to a wheelchair, or think that 
     because my body is weak then my mind
       One of my personal challenges this past year was saying yes 
     to a movie and dinner with my friends. It meant not being 
     ashamed to be seen in my wheelchair, which may not sound like 
     a big thing to an adult, but it was a scary first step for 
     me. To help me accomplish this, God blessed me with two 
     guardian angels, my friends Stephanie and Britney. Stephanie, 
     my best friend for six years now, proudly pushes me through 
     the mail, across parking lots, or up to jewelry counters. We 
     have an understanding that when she pushes, I hold all our 
     packages, frozen cokes, and purses. Stephanie has always 
     treated me with dignity, great compassion, and honesty, and I 
     thank her for that, Britney is a girl I met at Muscular 
     Dystrophy Camp last summer, and she is fighting her own form 
     of the disease. She is also a sophomore living in Alliance. 
     Having someone to talk to who truly knows how you are feeling 
     because they are going through the same experience is a one-
     in-a-lifetime gift from Heaven. The two of us together at the 
     mall is a team adventure with both of us counting on the 
     other for balance or for a steady hand when trying on a new 
     lipstick.
       God has also given me a wonderful family, who has taught me 
     how lucky I am. I can tell my mom anything, and I do. She 
     always listens when I need to vent my frustrations. She makes 
     the jerking muscles relax the fevers subside, the exhaustion 
     feel comfortable. She makes me laugh. My dad brings breakfast 
     upstairs to me every day before school so I don't waste any 
     energy going downstairs into the kitchen. He has remodeled, 
     rewired, and redesigned our entire house to accommodate me 
     and carries my wheelchair up and down the steps hundreds of 
     times per week. He makes me safe. My brother has done off to 
     college this past year, and surprisingly, I miss him! He used 
     to look out for me when we were in high school together, and 
     he still calls to see if I need anything. He makes me normal. 
     My dog, Oats, is always glad to see me and cares about me in 
     a dog sort of way. Somehow she can predict when I'm going to 
     fall and has actually sacrificed herself as a sort of cushion 
     between me and the floor. She follows me from room to room, 
     stares up at me adoringly and loves to eat potato chips while 
     I tell her about my day.
       So I'm learning with daily ``help me get through this'' 
     prayers, to look at the world with the following in mind: If 
     I need to create solutions to my unique challenges during my 
     teenage years, then I also need to actually ``get out there'' 
     to experience them. Considering all the things I hope to 
     accomplish within the next few years. I'm going to need all 
     the ``out there'' experience I can muster! You see, I plan on 
     driving within the next year, which will mean special 
     testing, special adaptive devices, and, hopefully, a ramped 
     van. My biggest dream is to have my own motorized wheelchair 
     within the next year and enjoy the freedom to wheel around 
     unassisted. The grandest of all will be attending college 
     upon graduation from high school.
       With the continued support from everyone around me and 
     God's graceful hands holding me up, I will write to you again 
     a few years from now with news of my adventures on a campus 
     somewhere, running for class president.

     

                          ____________________