BY Adrianna, Dan, Katelyn, Kathy, Stephanie, and Steven. Edited by Tim Poynton

Transcription

1 A book by her friends to help people understand how Ataxia-Telangiectasia affects them, and the people around them. BY Adrianna, Dan, Katelyn, Kathy, Stephanie, and Steven. Edited by Tim Poynton

2 Hi - we are Michele s friends! We are currently in 6 th grade at Rensselaer Middle School. Here are most of us! Stephanie is in the front on the left. Katelyn is behind her, and Dan is in the back left. That s Michele in the middle. Adrianna is in the back on the right, and that s Steve in front of her. Kathy also helped a lot with the book - you will meet her later. 1

3 In case you are wondering, we are writing this book to tell a story about our friend Michele. She has a disease called Ataxia-Telangiectasia, a disease you are born with. Basically, A-T is a disease in her brain that makes it difficult for her to control her muscles. People who are born with A-T can usually walk without assistance until they get to the age of 3 or 4. Most of us have known Michele since kindergarten, when she was able to walk a little and she talked a lot more. 2

4 This picture shows Katelyn in the red and black shirt, and Michele in the tan overalls and red t- shirt. We are painting a pumpkin at the fall festival we had at our school. Michele painted half of the pumpkin and Katelyn painted the other half. Michele sits in her wheel chair she uses to get around school. She loves to do arts and craft activities. Right now we are all enjoying the sixth grade with Mrs. Hausler, Ms. Brown, and Ms. Schultz. During the school day Michele does lots of things just like we do. She goes to all of the same classes we do, and does all of the same work. Every day after school, she gets help with her homework from Miss Broderick. 3

5 Michele has to do all the same work because A-T doesn t affect the part of her brain she learns and thinks with. Here is a picture of Kathy (blue shirt), Katelyn (purple shirt with stripes), and Stephanie s hand. Michele was trying to grab Stephanie so she could be in the picture - but she didn t want to. Because Michele has A-T, she does do some things differently in school than we do. The most obvious thing she does differently is use a wheelchair but that doesn t mean she sits in her chair all day. 4

6 Sometimes Michele will play gym with us, but if she doesn t play gym with us, she will spend the period doing therapy with Miss Broderick, Miss Brominski, or Miss Sanger. Miss Broderick is a Speech Therapist, Miss Brominski is an Occupational Therapist, and Miss Sanger is a Physical Therapist. They do lots of different exercises with Michele like walking with her booties, or AFO s (Ankle Foot Orthoses) and to help her with her muscle coordination, speech, and other skills. 5

7 Michele also goes to swim therapy on Tuesdays with Miss Sanger. She uses weights and a water treadmill in the pool to help regain her strength, and she walks by herself too! The water in the pool is kept very warm to help Michele s muscles it is always at least 88! Michele also gets to bring a friend to swim, usually Katelyn, Stephanie, or her sister Amy. Here is Michele with Miss Sanger, and her sister Amy During Swim Therapy 6

8 Michele has her own laptop computer. It s pretty neat. It s easier for her to use the computer than it is to write, so her teachers make sure that the lessons are prepared for her to do on the computer. Since Michele doesn t like to talk in school, she also can use her computer to let people know what she needs like to get a drink or a snack. Michele Also has Hypoglycemia (low blood sugar), so she needs to have frequent snacks. So she gets to eat in class we have to sneak our food! 7

9 We have been friends with Michele since kindergarten, and she has changed in many ways. Just like the rest of us, she has gotten taller and smarter. But because A-T gets worse as you get older, she is not able to walk, talk, and run like she used to. Michele has also become much more shy - she doesn t talk much in school any more, but when she is at home she is very active and talkative. Not only is Michele our friend, but she is a GREAT FRIEND to have. She is nice and kind, and can do pretty much everything we do except walk. For example, we make crafts, play on the playground, Here we are at a dance! Stephanie is in front of Michele, Katelyn is behind her, and Kathy is next to her. We had a lot of fun at the dance! 8

10 and Steve and Michele have even gone fishing in the summer at their summer camp! A-T doesn t affect just Michele, it also affects her family, like her cousin Monica, friends, teachers and everyone around her. So, even though only about 600 children have been diagnosed with A-T, the disease has a significant impact on thousands and thousands of people. Here is a picture of Katelyn and Michele at the A-T Bowl-A-Thon last year. Michele was autographing hearts here. The Bowl-A- Thon also helped raise money and awareness for A-T. 9

11 Frequently Asked Questions Hopefully by now, you can see that while Michele may seem a little different because of A-T, she is really more like us than she is different. If you should ever get to meet someone who has A-T, here are some helpful answers to some common questions that we have learned over the years: 10

12 How do you get A-T? A-T is something you inherit, or are born with. To be born with A-T, both parents must have an ATM gene. The chances of both parents having the ATM gene are very, very small. That is why there are so few people with A-T. It s kind of like inheriting poor vision or blonde hair just because one person in your family has it doesn t mean every one else does. Michele has two older brothers and a younger sister who do not have A-T. 11

13 How should people with A-T be treated? People with A-T should be treated exactly how you would want to be treated with respect. For example, Michele HATES it when people talk to her like she is a baby. Why isn t there a cure for A-T? Researchers have not yet found a cure for A-T. That s because the disease has not been identified for very long. Throughout history, there have been devastating diseases like Polio, or 12

14 Tuberculosis that used to affect many people when there was no treatment. After years of research, however, those diseases were eventually curable. Since A-T doesn t affect many people, it is difficult to raise awareness of the need for more research to find a cure. That s why Walk-A- Thon s and Bowl-A-Thon s are important to raise money and awareness. 13

15 What do all of the medications do for people with A-T? Right now, all the medicines used to treat people with A-T treat the symptoms caused by A-T and are not meant to cure it just like all the medicines used to treat the common cold. To help keep from getting sick a lot, some people with A-T take medicines to boost their immune systems and to help with allergies. Some people also take medicines to prevent nausea, which results from shaky eye movements. 14

16 Why does Michele wear booties (AFO s)? Michele wears the booties (Ankle Foot Orthoses) to help her walk. They provide extra support to her ankles and feet, and make it easier for her to stand and walk. 15

17 When is Michele going to feel better? We don t know when Michele will feel better. Doctors are constantly looking for ways to improve A-T patients quality of life, with new medicines and treatments. 16

18 Why does Michele use a wheelchair? Michele can walk, and could walk to and from her classes with her walker and AFO s if she had to however, walking makes her very, very tired. If she walked all day instead of using the wheelchair, she would be too exhausted to learn in class, or play at home. 17

19 Why doesn t Michele talk in school? Michele is selective mute, which means that she chooses not to talk in school. She doesn t like to talk because sometimes kids can be mean, and she doesn t want anyone making fun of her. 18

20 Can Michele read? Michele can read, but the shaky eye movements caused by A-T makes it difficult for her. To help her to read, the letters need to be in a large font. Also, it has been discovered that using yellow paper helps Michele read more easily too. The yellow background with the large letters tricks her brain into staying focused on the page. 19

21 Why does Michele have an aide? Michele has an aide with her during the school day so that she can participate in school as much as possible. Without her aide, Michele would have a tough time keeping up with all of her classes. The aide helps Michele adapt to the classroom by giving her extra support and help with things affected by her disability. Remember A-T doesn t affect the part of the brain Michele thinks and learns with, but it does affect her reading and writing, things her aide helps with. 20

22 Why don t they let Michele write? Teachers don t like to have Michele write because it would use too much energy for her to write all the time. Instead, she uses a laptop computer or a calculator so that her energy can be saved for learning. 21

23 This Book is Dedicated In Loving Memory to Everyone Who Has Passed on to a Better Place Because of A-T. We would like you to take a moment to honor all the girls and boys who have passed from Ataxia-Telangiectasia, and remind you to support the A-T Children s Project in any way that you can. A-T Children's Project 668 S. Military Trail Deerfield Beach, FL HELP-A-T Internet Address: 22