Living with a Disability…

Hope is where it's A-T! By Teri and Alana Little November, 2011 1

This booklet is being written for a Service Project for the Disabled Awareness Patch for the Girl Scouts of San Jacinto Council, Houston, Texas, Brownie Troop 14559, (Moore Elementary School, Cypress-Fairbanks Independent School District), and the A-T Children's Project.

The Goal of this presentation is to: • • • • • • • •

Learn what the words different, disability and handicap mean and compare them to the word ability. Understand that while some disabilities can be seen, some cannot. Foster the realization that even if someone has a disability, on the inside where it counts, they are just like you and me. Educate others as to what living with a disability is like. Educate the girls on what ataxia telangiectasia (A-T) is and what it means for Lana. Foster acceptance of all children, regardless of their abilities. Earn the A-T Children's Project Patch Earn the Disabled Awareness Patch

Meet Lana... Hi! My name is Lana...well, if you want to get technical, my real name is Alana Ashley Little. (Lots of people can’t figure out how to pronounce my name, so they call me Alaina, which drives me nuts! My name is pronounced A-Lawn-A.) I was born in Gretna, Louisiana on October 10, 2003, which makes me eight. Right now, I'm in the second grade. I love school...I love seeing my friends, recess, reading, lunch, learning...honestly, there is nothing I don't like about it! My favorite colors are pink, purple and anything glittery. I love horses...I keep trying to talk Mommy and Daddy into letting me have one in our backyard, but so far, it's not working!

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I love to laugh, to tell jokes, to be tickled and I’ve actually gotten pretty good at laughing at myself sometimes when I do something silly. I love art, playing Nintendo, reading books, playing with my friends, going out to eat, helping Mommy and Daddy cook, shopping, anything Disney, playing outside, swimming, watching movies...I guess you could say that I like the same things you do!

I've been in Girl Scouts since Kindergarten, when I was a Daisy. Now, I’m a Brownie Girl Scout and I am always excited when it's meeting days! I love to go and see my friends...they are very funny and always make me laugh. We do fun activities and go on field trips together...we have so much fun!

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I have a little brother named Alex, who is my best friend most of the time.

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Sometimes, we can be really loud and we’ve been known to have some really good fights that end up with both of us in trouble!

I also have a dog named Jaxson who I love to cuddle with and play with. The only thing is...Jaxson is always trying to lick my face off...bleck!

I have chores I'm supposed to do...like picking up my toys and stuff, putting my dirty clothes in the hamper...and sometimes, I help clear the table.

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I get in trouble just like you too! I've spent a fair amount of time in the time-out chair and I expect I'll probably spend more time there in the future! I've said mean things to my brother, I've gotten grounded from doing things I like...and, I've been sent to my room on more than one occasion. I can also throw some really, really good temper tantrums when I'm in a mood!

When I grow up...I want to be a Princess Teacher.

The Dreaded "D" Word... On the inside, where it counts, I'm just like you. It just so happens that on the outside, I look different because I have a disability...and many times, that's all that people see. I don't like being different or disabled...I wish I could look just like you. Let's break down the word dis / ability. The word dis means apart, away, or having a privative, negative or reversing force.

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The word ability means the capacity to do something. Talent that enables someone to achieve a great deal. Some synonyms for ability are...capacity...faculty...competence...aptitude ...skill. So, when you put them together to form the word disability, it means having a

physical or mental condition that limits movements, senses, or activities. A disadvantage or handicap, especially one imposed or recognized by the law.

That's not so bad...but, the synonyms...incapacity...incapability...inability ...incompetence...I really don't like these words!

Don't Dis my Ability… This simply makes no sense...how can having a disability mean that I don't have the capacity to do something? To me, it just means I have to find a different way to do it! Plus, who says that I am unable to achieve a great deal? Honestly, I've already achieved a lot in my short life! What I've never understood is why you can't just call me Lana! If you really feel the need to call me something other than my name, how about just saying that I'm different or handicapped? I like those definitions so much better! The definition of different is not the same as another, or each other; unlike in

nature, form, or quality. Novel and unusual.

Actually, maybe being novel and unusual is not so bad! If we were all the same, life would be awfully boring! And...I really like the synonyms they use...diverse...variant...unlike ...distinct! The word handicapped means having a condition that markedly restricts one's ability to function physically, mentally or socially.

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Well, I guess that's not too bad...I guess it would be okay for you to say that I'm handicapped!

Me and my “Uncle” Joe Alsup riding on his Mule.

The A-T Monster... We've talked about how we are alike; now let's talk about what makes us different. When I was very little, I was diagnosed with ataxia telangiectasia (A-TACK-see-uh Teh-LAN-jick-TAY-sha) or A-T for short. Let's see if we can break it down and make it easier for you to understand...

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Ataxia simply means a lack of muscle coordination. It is what makes me “wobbly”. The ataxia is caused by a progressive degeneration of the cerebellum, which is a part of the brain that is located by the brain stem. To make it even easier, it means that I cannot control my muscles. Telangiectasias are small red spider veins. The telangiectasias are the easiest part of A-T. They just make my eyes look bloodshot. When I am out in the sun a lot, they get redder though, so I have to be careful with that. The telangiectasia can be anywhere on my body, but they don’t hurt at all. The presence of the ataxia and telangiectasia are considered the most common "hallmarks" of the disease. •

What is A-T? Imagine having a disease that combines the very worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies and cancer (usually leukemia or lymphoma) all in one disease.

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It is a rare disease that affects only about 500 kids in the United States and about 1,000 worldwide.

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It isn’t contagious…you cannot “catch” A-T from me. It is a recessive genetic disorder which means it remains hidden in the DNA of a carrier and can only occur when two carriers have a baby. Each time a child is born to the same carriers; there is a 1 in 4 chance that the child will have A-T.

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It considered an Orphan Disease, which means that because it doesn’t affect many people, drug companies are not looking for medicines to help kids like me.

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There is no cure or treatment. Children with A-T are generally wheelchair dependent by the age of ten. A-T is fatal.

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It is a progressive disease, which means my symptoms will continue to get worse.

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How A-T affects me… Wobbliness (Ataxia)... My ataxia affects many areas of my life. It makes it very hard for me to be still and my body often weaves back and forth and there is nothing I can do to control it. Sometimes my arms and legs jerk and have tremors. If I bump into you, I'm sorry; I simply need a little more space around me than you do. When I am sitting on the floor, you may notice that I lean on you, I'm not trying to crowd you, it's just that if I don't have anything to lean on I will often fall right over.

Me and my friend, Riley Miller who is helping to keep me from falling.

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I use a wheelchair. It's not that I can't walk...I just can't control my muscles well enough anymore to be able to do it without getting hurt. Before I made the move into my wheelchair full time, I was constantly falling and hurting myself, sometimes pretty badly. If I'm not falling, I'm literally bouncing into the walls. The wobbliness also makes it very hard for me to hold my head up, so it tends to either flop over backwards or forwards. My wheelchair is cool, as it tilts, so it takes some of the pressure off of my neck. My neck wobbliness makes it very hard to get a haircut! When I do get my haircut, someone has to hold my head, or I might end up with a Mohawk! My eyes like to roll up like I'm looking up in the sky. (This is called oculomotor apraxia.) If you notice me doing that and it bothers you, simply ask me if I can bring my eyes down and I will try.

Talking points… Besides not being able to walk and run like you do, the one thing I dislike the most about having A-T is the way it affects my speech…it’s frustrating! It makes me slurry and hard to understand. (This is called dysarthria.) Sometimes, you may not understand what I say...if you don't, ask me to repeat it, I don't usually mind. If you still can't understand me, I can use my Dynavox to communicate with you. The Dynavox is a communication device that lets me push buttons to speak. Sometimes, when I’m having an especially hard day, I can use the Eye Gaze Controls on my Dynavox. This literally allows me to talk to you using my eyes! It’s really cool, but it makes my eyes tired.

Tools of the trade… I love my Dynavox! Would you believe I’ve been using one since I was two years old in preparation for the day when I would need to use it all the time? In addition to being a communication device, my Dynavox is also a fully functioning computer, complete with air card, E-Book Reader, an MP3 system and I even have a photo album on it. It can also be programed to turn lights on and off, as well as the TV!

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As my fingertips and hands don’t have a lot of strength in them, any activity that requires me to use them is difficult. Because of this, I have a special keyboard called a KinderBoard that I can use on the computer and on my Dynavox. I also use a large trak ball instead of a mouse or a touchpad for the same reason. Besides my Dynavox, at school, you may see me sitting in a special chair. It’s called a Rifton chair and it supports me so that I can’t fall out. It gets really tiring sitting in a wheelchair all day, so sometimes, I like to get out and sit just like you!

Let’s eat… When I eat, I prefer to eat finger foods, as holding a fork and spoon can be a very messy proposition for me! My food has to be cut up for me, as I might choke on it otherwise. Drinking out of a regular cup is also difficult for me. So you will often see me using a straw. By the time dinner comes along, I am very, very tired, so Mommy and Daddy often have to feed me. I really, really don't like this as it makes me feel like a baby! In the future, if I begin to choke a lot, or I am unable to get in enough calories, I will have to have a feeding tube put in. This means I will be fed liquids through a tube in my stomach.

Fatigue or why I need my Beauty Sleep... Fatigue is just a fancy word that means that I get tired very easily. Keep in mind that my muscles are constantly in motion, so it takes a lot of energy just being me. I generally go to bed early and sleep through the entire night. You can always tell when I'm tired, as my wobbliness gets much worse. At school, I go to the Nurse's office to rest after recess, and any other time when I need to. I really don't like doing this, as I don't want to miss something in class! My tiredness is one of the reasons I only go to school four days a week. Wednesday is my off day from school, as I go to Speech and Occupational Therapy 12

and then at home I get immunoglobin therapy. I would much rather be at school with all of my friends! As I get older, my days and weeks will be further shortened so that I have the energy to enjoy all the fun stuff in life.

My Immune System... My immune system is probably one of the most worrisome part of A-T for my parents and my doctors. (Our immune system is what helps our bodies fight against germs, infections and stuff like that.) In the last few months, we found out that my immune system isn’t functioning anymore. To help it work and to keep me from getting sick, I get subcutaneous immunoglobin therapy once a week.

It takes all of this for my weekly immunoglobin infusion!

In the beginning, I was really worried about this, but now, it’s no big deal to me. First, Mommy puts some numbing medicine on my tummy. She then inserts three needles into my tummy. The needles are connected to some tubing, which in turn is connected to a pump. It really doesn’t hurt me, all I feel is some pressure when the needles go in. It takes about two hours for the medicine to be infused and while I’m connected to it, we cuddle, watch movies, read or play with the iPad. 13

Mommy always draws a funny face on my tummy so she knows where to put the needles!

In order to check my immune system, when I go to the doctor I often have to get a whole bunch of blood work done. Seriously, I think those people are vampires in disguise, as they usually take six to eight vials of blood from me! (In addition to checking my antibody titers, the doctors are also looking for the early warning signs of cancer.) I want all of you to know that when they are taking my blood, I try very, very hard to be brave. We have to be very careful so that I don’t get sick. Everyone who lives in my house must have pneumonia and flu shots, including me. Last year we all had to have H1N1 shots as well. Alex was not real happy with me about this, as he hates shots! If someone is ill then I cannot be around them because chances are I will catch what they have. When my chest gets congested I have to use a nebulizer to make it easier for me to breathe. I really don’t like them, but I am used to them. Swallowing problems can also cause problems with my lungs, as the risk of aspiration pneumonia is increased in kids with A-T.

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Just stuff... My cognitive skills are great...this simply means that I'm very smart. My problem is that the A-T slows down my processing. So, if you ask me something, please be patient, sometimes it just takes me a little longer to respond to you. With all that said, I am not made of glass. I am actually a pretty tough little kid and more than anything in the world, I want you to treat me as normally as you can!

With a little help from my friends… Whenever you see me, you will notice that I’m never alone. At school and at home I have Aides that help me do everything from going to the restroom, to eating, to helping me do my school work. I really don’t like this as I really like to be independent and do things by myself, but, I’m learning that sometimes we all need a little help from our friends. Sometimes it is very hard for me and my family to live with my A-T. We are very lucky that we have a network of friends who have kids with A-T just like me. We call these people our A-T Family. We talk to them on the phone, Skype, Facebook and communicate on this thing called the A-T List Serv, which is operated through the National Institute of Health. Our A-T Family spans the globe from the United States, England, Ireland, Sweden, Australia, South Africa, Greece, Israel, Chile and Canada.

Working hard for all of the kids and families affected by A-T are the wonderful folks with the A-T Children’s Project, Jennifer Thorton, Executive Director, Rosa Fernandez, Family Support Coordinator and Aletia Patterson, Fundraising Coordinator.

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The AT Children's Project was founded by Brad Margus in 1993, when his two sons, Jarrett and Quinn were diagnosed with A-T. “The A-T Children's Project is a non-profit organization that raises funds to support and coordinate first-rate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure or life-improving therapies for ataxia-telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a strikingly high rate of cancer, especially leukemia and lymphoma.”

The A-T Cure Team raises awareness and funds for the A-T Children’s Project. I am a proud member of the A-T Cure Team. Each of the teams have cool names, my team name is Lana’s Hope.

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My name is in the middle row, 12th from the top.

One of our favorite members of the A-T Cure Team is Tim Borland. Tim is an ultra-marathoner who ran 63 FULL marathons in 63 days to raise money and awareness for A-T. That’s 26.2 miles every day for 63 days!

Tim Borland, Lana and Kevin Kline, Strides Across Texas Houston, Texas January 2010

Brad and Deborah Carr made a documentary about Tim and A-T called FEAT. We actually have the movie if anyone is interested in watching it to learn more about A-T and Tim's incredible journey.

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Another one of our favorite members of the A-T Cure Team is Hunter Kemper. Hunter is a triathlete and three-time Olympian (2000, 2004, 2008). He is also a six-time US Elite National Champion, 2005 USOC Sportsman of the Year, 2005 – 2006 World Ranked #1 and a five-time IronKids National Champion. Hunter, who has been on the front of the Wheaties Fuel box, is a tireless advocate and fundraiser for A-T awareness and research.

Hunter Kemper

Hunter has a new program starting next year called Hunter’s IronKids, you can learn more about this program at: http://www.hunterkemper.com/hunterkemper.com/Hunters_Ironkids.html

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Lana's Cousin Tyler, Hunter, Lana (she was half asleep!) and little brother Alex at the A-T Cure Team Banquet, Walt Disney World, Orlando, Florida, January 6, 2011.

Recently, one of our older A-T Kids, Joe Kindregan wrote a song called “Hard Life” and his friend, Brad Paisley recorded it. You can find it on iTunes and when you download it, the proceeds go the A-T Children’s Project to help fund a cure for A-T!

Joe Kindregan and Brad Paisley

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For more information about Girl Scouts: www.girlscouts.org For more information about Girl Scouts of San Jacinto: http://www.gssjc.org/ For more information about A-T: www.atcp.org For more information about Lana: http://www.atcp.org/Alana If you’re on Facebook, become a member of Lana’s Hope: www.facebook.com/groups/teamlana

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