Nick's Battle
| Nick | Adventures | Articles | Batten Disease | My Family | Guestbook | Donations | Links | Contact Us |
Nick is a strong willed boy who loves to ride his bike, play football and basketball, swim, and enjoys drag racing. He wanted to drive a Junior Dragster at the age of eight. We know that this will not happen due to his eyesight. His favorite racecar driver is no other than 13 Time NHRA Funny Car World Champion John Force. His sister, Adeline, drives a Junior Dragster at present. He is presently in the vision loss stage of Juvenile Batten Disease. Soon he will be without sight. He will be attending 2nd grade in public school.
Nick was born on December 18, 1996, the same day as his Great Grandmother Wisley. He had a normal birth with no complications. Everything seemed normal until the age of 5 years. It was determined that Nick was hyperactive during his first year of kindergarten. He was tested to be color deficient during screening at school in May of 2002. We felt that this was not right; therefore we pursued this matter with our ophthalmologist. He had a vision test on July 15, 2002, and it seemed that he was just not cooperating. We asked that Nick repeat Kindergarten due to his age and maturity. We took him back in October for testing again. This time the doctor saw a problem.
We were then referred to Dr. Dankner for further testing. This was done on the next Tuesday. It was found that there was definitely a problem. Dr. Dankner then referred us to Dr. Janet Sunness at The Lions Low Vision Clinic at The Wilmer Eye Institute at Johns Hopkins University. The earliest appointment we could get was on December 6, 2003. The appointment was moved back to the following Tuesday due to a massive snow storm that shut down Baltimore for the day. We found out the next Tuesday during testing that he was legally blind. His vision was 20/200. The testing was all day that day. The test results did not give a precise answer as to what was going on. Therefore, at his doctor’s request, we had all the testing redone under anesthesia in March 2003. The doctor at this time also took blood and a conjunctal biopsy. The biopsy came back with some result the she did not like.
We were then referred to Dr. Gerald Raymond at Kennedy Krieger. Dr. Raymond is a neurologist and a genetic specialist. He suggested that we have genetic testing done to start ruling things out. Starting with the worst was Batten Disease. We obviously did the testing, and Nick came up positive for Juvenile Batten Disease. We were told on June 20, 2003. What horrifying news this was for our family. We were devastated by this news. We have tried to adjust to back to as normal as possible. This is not an easy thing to do.
Nick's vision has been slowly degrading. The Maryland School of the Blind did an assessment on Nick's vision. His vision was found to be 5/600 when using both eyes. This means what a normal 20/20 person sees at 600 feet he sees at 5 feet. He also reads a six inch letter at 2 inches. This evaluation was August 27, 2003.
Nick saw Dr. Boustany at Duke University in September. What a wonderful person. She always answers our questions.
Nick has been able to do some wonderful things and meet wonderful people. This is covered under the Adventures Area of this web site. We cannot say "thank you" enough to those people that have extended themselves and our their resources to Nick and our family.
This has been a busy time for us.
We went through the Holidays. Nick started taking Flupirtine the Friday after Thanksgiving. Otherwise, the Holidays were un-eventful.
Spring 2004
We took everyone up to Ski Whitetail to go Snow Tubing. Nick was a little scared in the beginning. However, he loved going down the hills soon thereafter.
We, Nick and dad, went on a Meet and Greet when we to see Toby Keith in Concert. This really made his day. He, Nick, even went in and said "Hi" to some of the military personal that were at the concert.
Nick is still going strong. He still loves to ride his bike, play with his dog Jake, go to the race track, and he still drives go karts( the slow ones). He still wants to drive a junior dragster when he turns eight. We know that he can still see some things. However, it is not what he can see, but what he cannot that worries us.
We have even overheard him pray, "Please, don't make me blind."
He still watches/listens the NHRA Powerade Series and ask how his "friends" our doing.
Summer 2005
Nick is still very mobile. He is still losing his sight.
Nick got to go listen to Jay Blake, Follow a Dream, gives his motivational seminar at Lincoln Tech in Columbia, MD after dinner with Jay and Mary Beth.
Norwood Elementary School did a Fun Run to Benefit Juvenile Batten Disease Research.
Nick went to a swim party at the Hampshire's for the Jr Dragster Drivers from Mason Dixon Dragway, (Thanks to the Hampshire's everyone had fun.).
He "worked" at The Dundalk Heritage Fair and got an "up close" view of this years fireworks thanks to Jimmy Rutter. This time Nick sat and watched all of them. He spent a week at MSB (Maryland School for the Blind) and even spent the night. This was a first since this all began.
He went to Bristol again for the Junior drag races and met more friends.
The BDSRA National Convention was good for him he met more friends and even some his age.
He still wants to drive his Junior dragster though. He got upset with me when he saw that the tires were off the car.
Summer 2006
Sorry, it has been so long about writing. Nick is still going strong and still has some sight. We have not "seen" anything else as of yet. Nick received a two seater car from some of the parents at Capitol Raceway. He now feels like one of the other kids. THANKS!!!
He once again went to MSB for summer camp. He had a blast.
He saw the fireworks again up close in Dundalk. Once again, Jimmy Rutter did a great job.
Nick was filmed for a segment on EPSN2 for the Eastern Conference finals that did air Aug 6. It also re-aired October 26 2:00. Thanks to Jack and the staff of Thunder Valley Dragway for allowing Nick to make a pass. He just loves being in his car.
He raced at Division 1 races. He had a ball and could not wait to race. Thank you for the Wally. He does know that it is a special trophy and as he said "not everyone has one of these".
Nick had a wonderful time at the BDSRA National Convention in Nashville. He got to see his friends again and made a few new ones. We even brought out Nick's car. He was glad to see some of his teachers there this year. We think they picked up a lot of information.
Nick still is loosing vision, but nothing else has started as far as we can tell. He is a fighter and will not let this stop him. We are making new friends and are trying to get Nick's story out . He also has a myspace of nicksbattle. Please send us a friends request if you want. Sometimes, I will send an email to make sure people that want to be on his friends list are friends. We also have a group started that is Nick's Battle Group. This is to keep up with what events may be held.
He is still doing Cub Scouts, and going to Norwood Elementary School. He still wants to race. He would love to drive, but enjoys riding. He even wants a cut-off switch in his compartment.
Nick was able to "race" at divisionals this year. NED allowed this to let him know he is normal. He had a blast at Mason/Dixon as he normally does. The racetrack, Capitol Raceway and Mason/Dixon Dragway, is his second home(sometimes we think he wopuld rather be there). I think this is because everyone allows Nick to be Nick and treats him like any other friend. He is even expanding his friend base to other tracks.
2007
Not too many things out of the ordinary.
School , Cubs Scouts, and going to the Moose as usuall.
This year at ECF in Bristol Nick met Jamie Cable. Jamie is also blind and has a brother that races Juniors Dragsters. We are going to try to get together so Jamie can have a ride. He also wanted to race before losing his sight. Jamie and Nick also attended summer camp at Maryland School for the Blind.... This made camp better for Nick, because he had a friend there.
Nate Jacobson put a race together to help raise funds for Nick's Battle Foundation at Mason Dixon Dragway. This was a juniors race were pledges were collected by the drivers and turned in instead of entry fees. The drivers raised over $4500.00 with the help of the some of the adults. I was cold in the morning, but the event came of so well that it is going to be annual race. Thank you to everybody. Nick was allowed to race with everyone else, just like at Capitol Raceway. His team even one in the first round. His sister was the actual event winner. Thank you to all of the friends of Nick's that came out. We cannot get through this without all of you.
January 2008
Not too much has changed with Nick. He is still loosing his sight. He now bumps into things when it gets dark. He still loves to play the video games. He got Guitar Hero for Christmas, cannot see the screen well enough to play it, but he still tries.
Please read this essay that was written by a friend of his Emalee Stefanowicz. She wrote this for a college scholarship without help.
March 2008
We just spent two days at DC Childrens National Medical Center for a EEG test totest for seizures. The test came back negative!!! We know it will come someday, but just not today. He still loves drag racing and cannot wait for the season to start next week.
August 20, 2008
We have had a busy summer first was Eastern Confernce Final in Bristol. Nick had a ball. Then we went to Camp New Hope NC. This was a wonderful week of doing very little except fishing, going on trails, rafting, canoeing, roasting marshmellows, sleeping out in a tent(boy was it cold that night), picking blueberries, and most of all making new friends. We are looking forward to returning there. I was just such a joy to be there. Thank you Randi, Marc and Will.
We went to Maple Grove and had a ball again. Please check back we havr finally decide how and what we are doing with the signed helmet, but do not want the cat to far out of the bag. Final details need to be ironed out. Nick starts at the Maryland School of the Blind next week, and he his looking forward to it.
Updated January 18, 2008