By Joseph Pratt
Duchenne muscular dystrophy is a severe form of muscular dystrophy caused by a genetic defect, which has a very quick progression rate and an average life expectancy of those diagnosed of 15-20 years. Treatments aim to control the progression with steroids and painful braces. Muscular dystrophy is especially complicated and hard on children, because they grow at such a quick rate; it is hard to keep them fitted for a wheelchair, which can be very expensive.
If not for the Muscular Dystrophy Association (MDA), most kids wouldn’t get the proper treatment, medication or equipment. The diagnosis also becomes taxing on a family budget.
The fact that this disease is so rare, what are the odds two local schools would be celebrating students with the same problem that are around the same age? Last week, both Portsmouth Elementary and East Community Schools celebrated the life of two of their strongest students on the very same day. Brilyn Robinson, a first grade Trojan at Portsmouth Elementary was honored with t-shirts and presents. Blake Colley, kindergarten Tartan at Sciotoville Community was honored with t-shirts, a rally and the chance to meet his hero, Spider-man, who presented him with a gift basket of Spider-man merchandise.
The Sciotoville event was sponsored through the school’s Academic Enrichment Program (AEP), which is funded through the 21st Century grant. AEP is an extended day/ after-school program. during all school days. The program allows students to receive extra academic instruction, as well as participate in enrichment activities.
All students and teachers in attendance wore t-shirts that proudly boasted “Colley’s Crew” on the front. The back of the shirts read “Tartans walking together for Blake.”
Carly Pennington, Miss East, also participated. Pennington’s platform for River Days has been muscular dystrophy awareness. She will be visiting classrooms and talking with the students about MD and how they can become involved in raising awareness in the fight against this disease.
“I just called them all up and asked if they wanted to help out with my event and they were all happy to,” Pennington said about the other River Days candidates volunteering. “Besides one that was in Europe and one that was in a competition, I think everyone showed up. We decided we would all come together and help each other out at their event.”
Pennington said that she is glad she has had the opportunity to get to know Blake and has discovered they are pretty good friends. She also said that they are both good at making each other laugh.
“I was interested in it, because it isn’t a very good disease and the little boy is very sweet and I like him a lot. He is a very smart, intelligent little boy and is very inspiring. So, I thought I’d do some research and have since wanted to help out,” Pennington said. “I can’t make a big difference, but I can do a lot of smaller things and I feel like this is working.”
All donations and funds raised by the school will go directly towards the Muscular Dystrophy Association (MDA).
Prior to the rally that was open to the public, Colley was visited by Spider-man, who came bearing gifts. The arrangement was planned by two local businesses, Awesome Town and Costume Emporium. Awesome Town was very eager to plan the event and donated comics and Spider-man merchandise. The Costume Emporium donated the Spider-man suit and also painted faces at the event.
Angie Finn, a 16-year teacher at Portsmouth Elementary, knows just how special Brilyn is. In fact, Finn taught kindergarten the previous year and switched to first grade, just so she could continue teaching him.
“He is very special. I just love him. I like seeing all of the people wearing his shirts and supporting him,” Finn said. “He is a fighter and if anyone can beat it, I think he will.”
Robinson was surprised when they called him into the library with everyone waiting, including his family, bearing gifts and donuts.
“We got pictures and donuts and I don’t know, everyone was wearing my Brilyn shirt,” Robinson said.
Robinson was happy to see his shirts and said he loves that they have characters from Power Rangers on it, which is his favorite show. Robinson said that his favorite power rangers are blue, red, green and white one, just the “boy ones”.
“I had fun, because I got surprises,” Robinson said. “I got Transformers masks. I feel good, ‘cause I like seeing people wear my t-shirts.”
Second grade teacher Abbie Carter organized the schools involvement with Brilyn. Carter didn’t know Robinson personally, but her husband is a friend of Robinson’s father and she knew about his story.
Carter said that they sold around 80 t-shirts.
“I just wanted to bring support here at school. It took off and everyone wanted one. It is a great thing to see, all of these people wearing their shirts and showing Brilyn that they support and love him.”
Carter said that the proceeds go towards Robinson’s campaign, but the focus of it all was for support and awareness.
Joseph Pratt can be contacted at the Portsmouth Daily Times 740-353-3101, EXT 287, or by Twitter @JosephPratt03.