Chelmsford Teen is Honored Patient for Boston Marathon Runner

We've been profiling Boston Marathon runners leading up to next week's marathon. Many runners are raising money for charity, and Chelmsford's Robert Ouellette, a patient of Children's Hospital Boston, is an honored patient of runner Doug Rooney. Here is Oulette's story in the form of a Q and A with his mother, Sharon.

Q: Why did your son first become a patient at Children's? 

A: On August 13, 1997 Robert was born 6 weeks premature.  During birth his heart rate was decelerating and not recovering.  After several hours of labor and Robert was getting into more and more trouble, so the doctor set up for an emergency C-Section.  During the rush to the operating room I was able to push him out.  When he was born he was purple, not breathing and no heart rate.  He was rushed to New England Medical Center to the NICU and spent 6 weeks there. From this birth injury Robert has the diagnosis of Cerebral Palsy. When we got Robert home he was not gaining weight and having trouble breathing. We were referred to Boston Children’s Hospital to the GI dept and we have never turned back once or regretted the change in hospitals. He is now in a wheelchair, has a tracheostomy, is fed via a G-Tube and is non-verbal although he has plenty to say.

Q: What have your experiences been like at Children's? 

A: Robert has been going to Children’s Hospital since he was 7 months old and he has always been treated with respect and dignity. The doctors and nurses have saved his life several times. 

He needed a tracheostomy when he was 6 days shy of his first birthday because he was getting pneumonia several times a year.  It was the toughest decision we had ever had to make, we talked with several doctors, nurses, respiratory therapist and parents of children with traches and we came to the decision that this would most certainly save his life.  It turned out to be the best decision for Robert. Several of his doctors use him as an example because of how much he thrived after the tracheostomy was placed. 

He has had several operations, some very risky lasting 8-10 hours but as much as the worry never leaves you and you pray that he will come out of surgery, there is always this trust that you place in the hands of the doctors and you know that they do their very best for your child.  Robert doesn’t mind going to the clinic visits seeing his 9 different specialist because he has a special relationship with each and every one of them.

Q: How did you get involved in the Boston Marathon aspect of this? How well have you gotten to know the runner who is running on your son's behalf? 

A: We have known about the marathon through Children’s for several years. It’s called the Patient Partner Program but because Robert is so busy with his daily life and constant doctor appointments it always seemed to be too much to take on and I didn’t think we could put our all into it.  But last year we went to the Marathon to watch it, this being the first time for my family, and Robert had a great time we thought, why not?! We can make time and this would be one more way we could give back to the hospital and get involved. 

So this is the first year Robert will have a runner run in his name. We have been emailing back and forth with his runner Doug Rooney and we’ve met for lunch. This is Doug’s first marathon as well as Robert’s and they seem to have been matched up nicely. He lets us know how his training is going and his sister is a runner and is giving him some great tips. Doug feels he is right where he needs to be and is looking forward to Monday. 

 Q: Will you and Robert be cheering him on? 

A: The Saturday before the marathon we will meet for a reception put on by Children’s hospital for the runners and their patient partners.  We will also be at a cheering section that Children’s has designated along the route so when Doug comes by he will know where Robert is and get the “push” he needs to finish. Robert will be at mile 25 with a nice big sign he made for Doug.Robert is very excited for it all. 

We are also doing a marathon themed curriculum for him at home and learning all about the history of the marathon and Robert is also doing his own little marathon in his gait trainer and walking 26.2 feet and he is trying to beat his time each day he walks it. He wanted to do a marathon like Doug and this is how he chose to “run” it.  Robert is in a wheelchair and can’t walk but he is a fighter and never gives up and I feel this is a great incentive for Doug to finish.

 Q: Have you gotten a lot of support from family and friends to support the runner? 

A: Yes, Doug has a page set up to help raise money for his run and all the proceeds he raises go to a specific part of the hospital, the Autism Language Dept. his page is: http://howtohelp.childrenshospital.org/bostonmarathon/page/Doug-Rooney.htm  Doug is hoping to raise $5,000.00 and is close to hitting his goal. My family and friends are hoping to get out on race day to support him and cheer him on. 

We are also doing the NStars walk for Children’s Hospital on June 10, 2012.  It is a 7 mile walk around the Charles River and Robert is trying to raise $500.00.  The energy on walk day is phenomenal and a great day to get out and celebrate all the kids that Children’s is helping, home and around the world. His walk page is http://howtohelp.childrenshospital.org/walk/page/OS0006.htm. Our team name is Robert’s Angels.