I was born, the youngest
of three, on July 4, 1978 in Gainesville, FL. I have two older sisters. Heather, her husband, Adam, and two sons, Matthew
and Nicholas and Jenn, her husband, Mike, son, Michael, daughters, Amanda Jane & Sara Marie and son, Jack.
|
|
When I was 5 we moved
to NJ. I attended various schools in NJ, mostly Piscataway Regional Day School. In 1993 when I was 15 we moved to TX.
I graduated from Grapevine High School in 1996. While attending Grapevine High I competed in The Special Olympics at the local
and area levels and in 1995 at the state level in Austin, TX. I have many gold, silver and bronze medals to show for my efforts.
In June, 1996 we moved to NH and because I was under 21 and still eligible for for Special Eduation Services, I was enrolled
in The Newport Middle High School. Currently I live in Newport, NH with my mom and step-dad, Patricia and Rolf Schmidt. |
|
Early on in my life I
experienced a lot of difficulty in learning to walk and when I did walk I always walked on my tippy toes. At 3-1/2 I was diagnosed
with having Duchenne Muscular Dystrophy, a genetic disease which affects one out of 3,500 newborn baby boys. |
|
At
11-1/2 I had to have my heel cords cut on both heels. I walked with a walker and as the disease progressed and I got weaker
I began using a manual wheelchair that I could push myself. Eventually, at 15, I got an electric wheelchair equipped with
a joystick which enabled me to drive it myself. |
|
During May, 1997, I began
having trouble with my breathing. My mom took me to the Dartmouth-Hitchcock Medical Center in Hanover, NH where I spent 5-1/2 weeks in the Pedi ICU and a tracheostomy was performed so I could be put on a ventilator
to help me with my breathing. |
|
Ever since the tracheostomy
I've been on a ventilator and have to be fed through a Mic-key button with a special formula. I also have a 'Vest' percussor
that helps clear my lungs and a special hospital bed and lift that enables me to live at home. I use oxygen at night and wear
a toe probe connected to an alarm which monitors my heart rate and oxygen level. I have to have help with all activities such
as shaving, brushing my teeth, and bathing. |
|
However, since the tracheostomy
was performed, I've been able to go on numerous trips, and have become more involved in the community. I was a volunteer
at Sullivan County Nursing Home as a visiting companion, and enjoyed playing cards and bingo with several of the residents.
In Sept. 2000, I gave my sister,
Jenn, away when she got married. All the ladies danced with me! I was a 'dancing fool' that night and we had lots
of fun. |
|
Some of my interests include
playing games, especially Disney Trivia and TV Guide Trivia Game. I like Baywatch and have a collection exceeding 300 movies
and over 100 DVDs. I also like music, especially the oldies and rock. I've seen Kenny Rogers in concert. And I like
the NY Yankees and collect baseball cards.
My heroes
are Christopher Reeve and Mattie Stepanek. I'm so sorry to hear of Mattie's and Christopher Reeve's passing.
I also
like listening to the Don Campbell Band in concert. Check out my Don Campbell page.
A Note From Bob's Mom:
Bob lost his courageous battle with DMD at 2:30am on April
19, 2005. Our whole family was with him when he died--4 generations. We donated Bob's kidneys and corneas, which
helped save or improve the lives of four people. I've heard back from three of the four recipients. You can read
about Justin, one of Bob's cornea recipients, on 'Justin's Page'. You can also read about Walter, one of Bob's kidney
recipients, on 'Walter's Page'. I actually got to meet Walter on July 9, 2009. I've been a Volunteer
with the New England Organ Bank since 2006 and I give speeches to promote organ donation. In Oct. 2009 I was asked to
become a Volunteer on the Donor Family Council at DHMC. |
NEXT PAGE
|