Local organizations seeking to help Wakefield child's fight against rare disease

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After retiring from the Unites States Army in 2010, Albert Topp signed up for a contracting job that took him to Iraq, where he spent the last eight years as a K-9 handler whose mission was to sniff out bombs and other explosives.

“I thought that was the hardest thing I ever did!” Topp said. “I came home from a war zone; but that doesn’t even come close to the hell I’m going through today.”

Topp and his son Corey, who live in Wakefield, are struggling through their own difficult times with Banner Topp, 5, who at age 3 was diagnosed with a rare disease entitled ROHHAD – Rapid-Onset Obesity with Hypothalamic Hypoventilation and Autonomic Dysregulation – which is a life-threatening syndrome that affects his breathing and heartbeat.

“I thought looking for bombs was the hardest thing I ever did,” Albert Topp reiterated with sadness ringing in his voice and pain written in his face. “This is a war zone no child should have to go through; this is a disease we have to take down so we’re asking for your help!”

To date, members of the VFW, DAV, Vietnam Veterans of America and American Legion have been working tirelessly to give the Topps – Albert, Corey and Banner – the much-needed support required so they can make major improvements and accommodations to their home in South Kingstown.

So Sunday, which coincidentally will be Albert Topp’s 62nd birthday, those organizations as well as a Veterans Committee consisting of Ray Denisewich, David Lage, Adam DeCiccio, Charles R. “Chuck” Palumbo and Paul D’Abrosca have worked tirelessly – along with Topp family and friends – for the First Annual Banner Motorcycle Run to Smash ROHHAD.

“This might be the biggest and best bike run in recent memory,” Denisewich, a volunteer official with the VFW Department of Rhode Island and ranking officer of the Giovanni Folcarelli DAV Chapter 1, wanted it known. “There will be everything from bake sales to raffles to fantastic food so we can help Banner continue receiving proper care as he battles ROHHAD.”

Thus, Sunday’s Bike Run will consist of a day-long list of activities with registration at 8 a.m. featuring breakfast items at the Kelley-Gazzerro VFW Post 2812 located 1481 Plainfield Pike in Cranston on the Johnston line. The motorcycle run will be off 10 a.m. and the route will include a ride through parts of Warwick and Narragansett hen back to Post 2812 for a special Italian buffet prepared by Spirito’s Restaurant and owners Greg and David Spirito.

To date, the Kelley Gazzerro Post and Folcarelli DAV Chapter have donated $350 each for special sponsorships of Sunday’s bike run.

“Veterans will also be donating $500 due to the hard work of Regional Manager Adam DeCiccio,” Denisewich also announced. “There will be a host of items including a 42-inch television, iPad and many more valuable raffle items that have been generously donated to help Banner smash ROHHAD.”

Registration is only $35 per bike and other sponsorships ranging from $250 to $500 are still available and as Denisewich explained earlier this week, “will go a long, long way to help this 5-year-old boy with the disease that has resulted in ongoing heartache for everyone who knows his grandfather Albert Topp, a U.S. Army veteran.”

The hot buffet will start at 2 p.m. and anyone wanting more information on registration or to make a donation to help banner should call Albert at 401-391-2633.

An example of what Banner Topp has had to endure happened three weeks ago when he was rushed to the hospital with a 108-degree temperature. He remained at the hospital for a week then came home with a feeding tube; however, he could not move his hands or legs.

But in the last week as Albert Topp told the Sun Rise, “Banner can move his hands a little but nothing with his legs. The best news came two days ago when he started talking; it takes time for him to say something but to hear his voice makes me cry!”

There was a time, as Albert Topp related, “when Banner spent seven months in a Boston children’s hospital and went through hell. He is the strongest superhero I now. You don’t think about things like this until it happens at home. So please, hold your children every day and tell them how much you love them. There are 100 known cases of ROHHAD and there’s no cure.”

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