Alex's Discovery of his Disorder

I have some great news!!! 

The National Institutes of Health discovered my genetic disorder. The doctors did genetic tests in April, 2013. Now we know that the name of my disorder is called “Brown-Vialetto-Van Laere Syndrome” or BVVLS and  it is a rare genetic disease. In fact, there are less than 40 people known to have this disease in the world today! That makes me very rare! I got some information from the neurologist and geneticist at NIH that my disorder is caused by a gene that does not work. It was given to me by my parents before I was born.  That means that my parents each have a copy of the bad gene too.  But because I got a bad copy from each parent, I have the disease but they don’t. The disease means that my body does not metabolize vitamin B2 (riboflavin) very efficiently. Therefore, only some Vitamin B2 makes it into my cells. This causes me to have nerve damage all over my body. I have been taking B2/riboflavin supplements and I hope it is helpful for BVVL. There is research that shows the causes and effects of this syndrome, so that’s why there is exciting news for everyone to hear about it!!  Riboflavin therapy has shown to improve and often reverse disease symptoms in many of patients who were treated.  That means there is hope my vision, hearing, arm and hand function could improve over time. This is very exciting news for me!

My busy Saturday!

I had a busy day. First, I got up early and went to Hunt Valley, which is north of Baltimore, for the race. My dad drove me there and I know it was very cold. I rode on a big jogger with big wheels for running. The team is called the Athletes Serving Athletes. It’s a great club that they push runners in wheelchairs! My team ran three miles on our race and it made me happy and thankful for running!

Then, I watched the Homecoming football game at my school. I was wearing a whistle and blew it with my mouth when they scored a touchdown! Even though the game was fun and they won!

Finally, I got dressed in fancy clothes and went to the dance. I thought all the girls looked pretty while the boys looked handsome. I enjoyed dancing with my friends and had lots of fun. My favorite song was called “Happy” by Pharrell Williams because I like the way he wrote the song with fantastic lyrics. Those are all the events I did on that day, so that’s why it was long and busy with the most fun I had.

Why it is Important to Never Ever Give Up

It is important for all people to not give up if they start doing interesting things because, even though we all face challenges in life, these obstacles only make us stronger.  For example, exercising and practicing moving your limbs is very important since you are disabled.  If you want to overcome some of your challenges and remain independent, it is important to keep trying and get as strong as possible.  But, if you need help, you can just ask for help…it is OK to ask for help when you need it.  Sometimes, asking for help means you are strong and determined, it does not mean you are weak.  It means you always have hope and want to find ways to make things enjoyable.  For example, if you can’t walk, you might be in a wheelchair or use a walker so you can still do things by yourself.  Another example, if you can’t use your hands, you might need Occupational Therapy and practice so you can do the jobs you want to do.  The reason why it is important to never ever give up is that if you want to keep doing things you should make adjustment to make things better for your life.  If you just give up, then a lot of people might think that is sad if you give up doing things or quit.  It is important to keep moving forward and being strong because it helps people with special needs do lots of things they want to do without help.  It is much more fun to do things independently than having to rely on people all the time.  It makes you feel better about yourself, the more you do on your own.  Using computers makes your life easier and using many techniques on the part of lives of everyone, so we would never ever give up!  Exercising is also part of your life so you can not give up exercising like swimming, biking, and running, even if it is hard to do.  You should change things if something happens to you.  For example, if you don’t swim good, then you can use a lifejacket to keep you upright.  There are many things online that people order to help them remain independent or try things they haven’t tried before.  They have special aides in the world that come to houses to help people with things they need while their parents have to work.  So, even though things may be difficult, we must be strong, try very hard, and do things to the best of our ability to bring us happiness.  Another reason why people shouldn’t give up is that they learn at school and try their best in classes, with tests and homework.  Education is very important if we want to achieve our goals in life.  Such as special education, mental education and socialization.  Those are three types of education many people need in order to be successful in their lives.

In case you are nosey...

So, are you all wondering why I use my nose to draw?  I will tell you…  I came up with the idea to use my nose on the screen to do things because my arms and hands do not work well, but I still really wanted to draw because it is always enjoyable for me and makes me happy.  So, it is easier that I use my nose to move around the screen, scroll, type, push buttons, and complete work my work.

 My touch screen has cool things I can do for fun with my nose (for example, I am a really good nose bowler!) instead of my hands or a mouse because the screen is only a few inches away from me so I am able to touch the computer while my arms rest on my lap.  It does not hurt my nose accidentally because it is strong and has more muscles than my arms. It is important to remember that I can only see anything on the computer if it is really, really close to me or very, very big!  So, using my nose makes sense because that is about the distance I need to be away from the screen to even be able to see it.  It is very complicated and interesting but I am able to use my computer on my own without a mouse!

Many people who can’t use their arms will use mouthsticks to do things on technology.  But, I tried that and found out that it might fall out of my mouth too often and also it hurts my teeth when I hold or bite it.  I also found out I have better control over my movement for drawing if I use my nose.

Welcome Fall!

Hi, it’s Alex again.  I have decided to start posting on my blog every week now to let people know about my new store and what is happening in my life.  My store is going very fantastic and it has several pictures.  Here is a list of pictures I have so far:

1. Ravens football
2. Helicopter
3. Man playing guitar
4. Zebra in a wheelchair
5. Mermaid
6. Bay Bridge
7. Seaside Cottage
8. Pontoon Boat
9. Wild animals
10. Beautiful beach

I created a cool store because I wanted to sell clothes and things with my artwork on them so I can make money to buy things I want like equipment to help me remain independent, to have money to do fun activities, and to buy things I need when I go shopping.  I am very excited to share my artwork with people because my pictures I am very proud of my amazing pictures.  Did you know that I draw my pictures with my nose?  Pretty cool, huh?

Alex Fitzgeralds Art Sales

Alex Fitzgerald’s

 Art Sales

I am in a wheelchair and I have a cochlear implant attached to my ear.  I have a lot of special education and I enjoy doing a lot of fun things in the world.

I am planning to sell my artwork because I am very good at drawing my pictures on my computer. I spend all the time creating my artwork on my computer and IPad.  So you can buy whichever pictures you want from my online store, like clothes, cups or posters.

My shirts with pictures will cost about $20 or more, depending on the size.  My store has other things you can buy with my art on them, but you have to decide which pictures you want on the products you would like.

  I draw pictures with my nose on my technology because I don’t use my arms or hands very much due to my neurological problems.  I like to paint on the computer and use backgrounds when I do my art programs.

Since I lost use of my arms I was determined to make more art, it makes me happy, so I had to think of a way to keep drawing.  I didn’t want to give it up.  I enjoy creating lots of pictures that show all the things in the world that makes people think how amazing they are!  My pictures have lots of colors and details that have things going on.  Sometimes I like to draw many things I like the most and sometimes I draw many details out of my head since I have seen them before.  I especially like to keep drawing because it is fun and it makes me very happy so I can show many people my artwork in many places.  

I want to sell my products with my pictures to save money for field trips like the Science Center, the amusement park, county fair, and the Baltimore Aquarium.  I also want to save money for equipment for the pool such as: lights, heater, and lift  and other things I need for the summer so I can enjoy it with my family and friends.  I also want to save money to buy a new bike for races and marathons.  I would also like to buy equipment that will help me remain independent.  I also want to save money so I can attend college after I graduate high school.  The reason why I want to go to college is because I want to become an artist for my job and sell more artwork and other things.  I am also thinking about becoming a math teacher.  These are all the things I can save money for.  After you buy my products I can spend money on the things I would like to do for the rest of my life.

I hope my store will be very cool and has a lot of things people can buy online.  

-Alex

The Fitzgerald Race

The boys from the Fitzgerald family are doing a race on May 3^rd, 2014. Their names are Alex, Steve and Ryan. Alex is disabled and is in a wheelchair. Steve is his father who will push Alex’s chair during their race. His brother Ryan is running with them, so they will hopefully run together and have fun. They will run a race called the Frederick Running Festival, so they will do a 5k track and go as fast as they can. The crowds will congratulate the runners who cross the finish line when the race is  over. It will start at 6:00 p.m. so you should decide if you want to go there and watch the race.

ALEX’S VIDEO CHATTING PROGRAMS

On the other day, I installed Skype on my computer. It is a special program that people can use to communicate with each other on technology. I have a username account that says alexmasonfitzgerald@gmail.com. In order to get Skype to work, you must first add a person’s email address, then get his or her account with a  user name. Once you add a person, their picture will automatically show up if they added one to their account. You need a camera to make  this program work and have the windows open. Also,  you must have sound quality so you can speak with a microphone in order for a person to understand your voice and your speech if he or she couldn’t hear well. When you skype with me, you have to speak clearly and listen to what I say. I also have Facetime besides this program. So when you use Facetime, you  must know the person’s email address or phone number and use it on your Ipad, iphone, or your computer if you don’t have a camera for Skype. My contact information for Facetime is Alexander.fitzgerald@yahoo.com. I enjoy video chatting with my family and friends, and it’s fun to join in with friends! Your software  must be connected to each other so  they will know who to skype or facetime. These   programs are required to chatting with people who want to join in with others who live far away or can’t come to their houses. For example, I don’t use phone calls so I would use video-chatting calls on my computer or Ipad so I could talk to people,  ask them questions, and  show them the things I had done in my life. Here are the rules that are important to how you use video-chatting programs…

1.     Put your head back so you can see each others faces.

2.     Pay attention to what a person is trying to do or say.

3.     Don’t turn the program off without saying goodbye.

4.     Have fun!

5.     Be nice and ask questions and tell them some things you like to do.

Alex’s Summer Time with His New Neighbor

I met a new friend who is coming to live near my house this summer. Her name is Michelle, and she is going to be working with me all year round. I am working on the things she can help me learn how to be improved and prepare for the rest of my life. I will have an exciting life with my new friend, so we are both going to do a lot of things that will keep me and my family busy! I hope my new friend can be able to help me with therapy, computer stuff, fun activities, and other things I can do in order to enjoy my best year with her and my family! I am going to be in charge of managing on special events and making sure we have money and stuff to make things work

Alex's Sevententh Birthday

For my 17^th birthday this year, I’m going to visit my grandfather in Boston. My dad is bringing me up there for my birthday present at the end of March. I’m visiting my aunts, uncles, and cousins while I’m there with my dad, but the rest of my family are staying home. My grandfather lives in Plymouth, MA, and we’re going to fly there, but I’ve never been on an airplane before. Me, my dad, and  my grandfather are planning a party and doing fun things together. When my dad and I got home from our trip, we’re going out to dinner with the whole family.

Wheelchair Access for Teenagers

There are many places that aren’t accessible for what teenagers in wheelchairs enjoy. It is a good idea to make more accommodations for some places that don’t have much accessibility.  In order to make inaccessible places better, people should put wheelchair lifts, ramps, and other modifications for teenagers who love to enjoy fun events. Most people like to play outside and spend time with their families and friends, so it is important to improve places that are not considered with wheelchair accessibility, with no elevators or ramps. Making places accessible would help disabled teenagers enjoy the events they really like to do in their lives. Here are some pictures of equipment that allow wheelchairs to access places that have stairs.

Introduction

Hi,
My name is Alex Fitzgerald. 

I am in a wheelchair and I have a cochlear implant. I live in a farm with a long driveway and grounds that are bumpy and inaccessible for my wheelchair. My parents take care of me and make sure everything goes well with me. 

I have a sister named Allison and a brother named Ryan, who are lovely fabulous with each other. I have a lab dog named Lucy, and four cats named Betty, Star, Lily and Claire. I have fun with my family and friends, but there are some people who don’t understand me. A lot of people love me since I am a special person, so I like spending time with my friends and special aids in school. 

My favorite sport is basketball because I like making baskets, and I also like football.

My favorite food is pizza, and blue is my favorite color. I work very hard in school and I’m good at math and art. I have fun at drama club and GEO club with my friends!

When I became a teenager, I got a problem with my arm and hand strength, so I am not able to lift or use my arms or hands on anything. For example, being more disabled is like having a nerve disease or problem. I’m not able to play sports, do jobs or eat food or anything with my hands because of muscle weakness. People could assist me with anything I need, such as support, transfer, and other accommodations. I use both a power chair and a regular chair using my feet at school. I use my nose to type and draw on ipads instead of my hands. When I went to NIH in April 2013, the doctors didn’t know what is wrong with me yet. Also, when I got taller, it is unsafe for people to transfer me on stairs so I must use elevators, ramps, and lifts with my wheelchair at every place with steps. In August 2013, I asked my parents to get me an elevator put in our house, but it’s too expensive for them to do that. Instead the chair lift was installed in October. I like it and it makes my life easier.