Welcome to my story. I am Bobby, I am six years old and I go to school at Easter Seals. I didn't always go there though, but I will tell you more about that later. I hope you read my story and come join my team, Team Bobby, for Walk With Me at the art museum in Philadelphia to raise support for Easter Seals. They have really helped me to grow and become the little boy that I am today. You wouldn’t know it to take a quick glance at me but I am disabled. Going to Easter Seals helps many young girls and boys like me to manage their disabilities and helps us transition into other learning institutions later in life. After my story I will give you information on how to help me gain support for Easter Seals.
Lets start long ago for me, around the middle of 2002 I was still in my mommy's belly and God wanted to make me special. I came out one month early and didn't look much different than any other newborn baby boys, just smaller, but I was. At first I needed to stay in the hospital for a few weeks. The doctors didn't know what to make of me, just a little floppy rag doll. They did tests on me for all kinds of stuff; so much that I don’t even remember what they were. Mommy and daddy stayed with me the whole time. Well, daddy had to go and take care of things for mommy at home, and to get some work done too, but he was there a lot. I held onto mommy’s fingers and when daddy came in I held onto his too, but with my toes! He still talks about that!
When mommy and daddy took me home after a few weeks of staying in the hospital. They were excited, and scared, the doctors still didn’t have any answers for them about me. I also had an apnea monitor that I had to stay attached to for six months; you see I wasn’t breathing on my own too well and this monitor would sound an alarm if I stopped breathing for too long. I did ok with it, and so did mommy and daddy. I didn’t stop breathing for too long that much. I also didn't open my eyes for a while. No problem, sometimes newborns don't open them right away but mine stayed shut for more than a month. When I did open them they only opened a little bit. On our many visits to CHOP, that is the Children’s Hospital of Philadelphia, they gave a name to one of the things that was affecting me. This was for my eyes, and it is called Blepharophimosis Ptosis Epicanthus Inversus Syndrome. WOW that is hard to say! It is called called Ptosis (toe-sis) for short. It is also called BPEI. I am not going to go over everything that happens with Ptosis, but daddy found a good website if you want to know more (click here). The Genetic doctors in CHOP found this out for us and I have gone into surgery twice to help correct it. Now my eyes open better. I also had a muscle biopsy at CHOP to see why I was so small and floppy, they couldn’t find anything there. I have had MRI scans to look into my brain, I still need to have more done though, but so far they have found nothing there either. Mommy and daddy have taken me down to Alfred I. duPont Hospital for Children to get a second opinion. The doctors at duPont gave us more answers. I had my second eye surgery at duPont too. I also went to see an orthopaedic surgeon at duPont and they found something wrong with my arms. Daddy thinks it is called radioulnar synostosis type 1. What this means is the two bones in my forearm are stuck together at the elbow, so I have restricted forearm movements, and impaired hand control. I think I do fine though, I don’t know what not having this syndrome is like!
I know it is getting boring listening to a six year old tell this story so I won’t be much longer and you can think over if you would like to join me at the Walk With Me event in helping Easter Seals raise money for kids like me and some that have a much harder time than me in their lives. Oh by the way did I tell you I cant speak yet either, and I am typing this all out to tell you about me, pretty cool huh! NOT! Mommy and daddy are telling you my story. You probably figured that already though!
Where was I, oh yeah I am working on learning sign language at Easter Seals to help me communicate. See me in the photograph signing ‘book’ to the left? I know my letters and can point them out on my letter games when mommy and daddy ask me to. Easter Seals works with me on this and also using pictures to show people what I want. I still eat stage two baby foods cause I can’t chew yet. Those are the pureed, pasty foods in the small jars. I do have my teeth, and can bite, ask mommy and my sister! I just haven’t learned to chew yet, but my therapies at Easter Seals are helping me learn to chew. They helped me learn to feed myself too! I am a little messy but we kids love to make messes. I have all my artwork hanging on the walls at home that I did at Easter Seals. I also use the walls as my canvas! I point this out to everyone who comes over, as well as the stuff from Easter Seals. I love showing mommy and daddy my wall drawings, they are so proud of my scribbles. They are not happy that I drew on the walls, but they love my drawings, and left them there. Easter Seals is also helping me use my hands better; remember my bones are stuck together? Easter Seals has helped me learn to pick things up with just two fingers! I still am working on this, but it is fun! I can also stack things up, I make mommy and daddy stack them too, so I can knock them down. That’s fun too! Easter Seals works on that with me as well through all the different therapies I get there.
The last, and most important thing I want to tell you, is that I am learning to walk. I have special braces on me feet to help keep my legs stay straight and give me support. They also help to strengthen my legs by forcing me to use them properly, see I like to point my toes, and feet down even when I am standing. The braces keep them flat on the ground. I also have a walker and I am very good at using it. At Easter Seals, I am the postman for my classroom. One of the teachers, or aids from my classroom will walk with me up to the mailroom and I grab the papers in the mailbox, put them in my mailbag, this is a suitcase strapped to my walker, and I deliver them to the teachers!
Download a video below to see me practice walking without my walker!
That was a brief history of what I have been through. With all of these things, through the grace of God and support from people like you, Easter Seals helps, teaches, and encourages me, and my family, other student and their families, to cope and work harder to make our lives better. Please join us in support of Easter Seals by joining Team Bobby for the Walk With Me event in Philadelphia. I would love to meet you and point in your direction, maybe point and wave at you as well. I like pointing at things I notice.
We really need your help and support. Whether you decide to come to the walk or not, I still would love to have you join my team and support Easter Seals by making a donation in my name. Please click on any of the words Walk With Me to open another window to the Team Bobby sign-up page. It would make a world of difference not only to me, but also to thousands of disabled people throughout our nation who go to Easter Seals, or receive help later in life. If you would like, daddy has put two donation buttons on this site to make it easier to make a donation, this will take you to the Paypal account for one of daddy’s businesses, then daddy can transfer the money to Easter Seals and add your name to my team. This is only here as a convenience for you, and does not have to be used. You can do the same thing by going to the Walk With Me web site. Daddy also put two icons to download forms for registration, one for personal sponsors, and one for corporate sponsors, who get advertising benefits.
Thank you for taking the time to read my story. And I hope to meet you soon. Also keep in mind; Easter Seals does a whole lot more than just work with disabled children. You can find out more by clicking on any of the words Easter Seals on this site, and the Easter Seals website will open in another window so you can learn about all that they do. I am just one of six honorary ambassadors to Easter Seals taking time to share my story. Please join my team in support of Easter Seals.
The walk is going to be held at the Philadelphia Museum of Art, (click for mapquest directions) on June 20, 2009, 8:30 AM. NO RAIN DATE!
Click on the icon below to download an offline registration form if you plan to join Team Bobby, but wish to send a check or money order instead of using the links for credit cards. Remember to write down the date for the walk so you don't forget to come and meet Bobby and some of his family!
Click on the icon below to download a corporate sponsorship commitment form. The icon below that one is an Excel spreadsheet showing the benefits and levels if you plan to sponsor Team Bobby at a corporate level.
Please sign my GuestBook below. If you have any questions concerning the walk, E-mail my mommy and daddy and they will get back to you. Please keep in mind ALL of the fields in the Guestbook entries will be public, and will need to be approved before they are posted. E-mail: info@bobbysstory.com
