I thought I would post Roberts story for those who havnt gone to his caring bridge web site . So you can see why he means so much to me and our club and to everyone he has met .
Robert is a 13 year old young man, who was born premature at 27 weeks gestation. He has cerebral palsy, hydrocephalus and is legally blind. He has had many struggles in his life so far, but remains happy, kind hearted and helps keep life in perpsective for many.
When Robert was born, he weighted 2lbs. 10 oz. He had an uphill battle from day one. There was not much hope that he would survive. He was constantly surrounded by his five brothers and sisters, Michelle, Jason, Mitch, Scott and Stephanie as well as many other relatives providing him with love and encouragement.
Robert was hospitalized for the first four months of his life. His biggest obstacles were his premature lungs and because of that he was on a ventilator for a very long time At about 3 months old, he was diagnosed with meningitis. Finally when Robert stabilized we were able to bring our son home. That only lasted 3 days and during the next 3 years it continued-a fews days home and a few months back in the hospital. We would call Children's Hospital our home away from home for the next three years.
Little did we know, the real fight was about to begin for him. Robert continued to struggle with his breathing and shunt malfunctions or shunt infections. He endured many difficult surgeries including shunt surgeries, several eye surgeries and placement of a gastrostomy tube. We feel very fortunate to have had some of the most compassionate and caring medical professionals help him and us through each hospital stay.
Our friends have been a tremendous help to us. When Robert was five and ready to begin school, Dave and Judy and the Minnesota Pharaoh's car club put together a benefit on Robert's behalf to purchase an electric wheelchair for him. The benefit was such a success that we were also able to have a ramp built for our house. The Pharaohs named Robert their president and continue to be a big part of our family’s lives. It is always a highlight for him every time he attends a car show or a get together with the Pharaohs. A huge thank you to everyone in that car club.
Robert loves all modes of transportation. His usual ride is either his electric wheelchair or his manual wheelchair equipped with chrome spinners. He is a frequent passenger behind his dad on their Harley Davidson Road King. His dad has a special trailer that carries the wheelchair behind the motorcycle. Robert also is the proud owner of a 1966 Rambler Classic. If they are not traveling on the Harley you will see them crusing the avenue.
St. Paul Harley Davidson has a special place in their heart for Robert. Owner's Tom and Melanie always treat Robert like he is one of their own children and their compassion for him is wonderful. Robert always looks forward to visiting them at the store or at local car events.
Another large part of Robert's life has been spent being a spokesperson for the Flood Run with his buddy Brian Zepp from KQRS. The Flood Run is a charitable motorcycle run that raises funds for children with special needs. Robert, along with scores of motorcyclists, have raised and donated tens of thousands of dollars to Gillette Hospital and other kids in need. Through this journey he has made another set of near and dear friends. A couple of years ago, he designed an motorcycle with Ron from Extreme Custom Choppers for a raffle to raise even more money.
Robert attended Mississippi Creative Arts school in St. Paul for six years. He is now enrolled at Bridgeview school, also in St. Paul. He enjoys school and his teacher Deb and loves swimming in the "really warm pool" with Mike. He recently had the lead role as "Josh" in a play performed with his classmates. He has built some very good relationships and lasting friendships with staff and kids from both schools.
I can't forget to add that he is an avid WWE - Raw wrestling fan. We have not missed any of their shows at the Target Center. He puts plenty of time in on the PS2 playing Smackdown and when his is done with the TV him and his dad have live wrestling matches.
Last year in October, Robert had his 42nd surgery to help correct his legs. Unfortunately he ended up spending a lot more time than was expected for him in the hospital. His long recovery was helped by the all of our family and friends. We could not have made it through those tough days or the days ahead without you. Bopper and I are so grateful for your love and kindness.
Thank you,
