Through Make-A-Wish, Simon Rohaly able to meet Mickey Mouse and go to Disney

May 22--FAIRMONT -- Four-year old Simon Rohaly of Fairmont has recently returned from his wish trip to Walt Disney World in Florida.

Adrianna Barbato, Northern West Virginia regional manager for Make-A-Wish, said, "(Simon) absolutely adores Mickey Mouse and everything about him. It is his favorite movie. It is his favorite TV show, and his biggest wish was to be able to meet Mickey Mouse and go to Disney."

Barbato said it was important for Simon to include his family.

"He said his favorite thing to do was to spend time with his mommy, daddy and brother," she said.

In December 2015, he was diagnosed with stage four neuroblastoma, an aggressive cancer of the sympathetic nervous system, at the age of 2 years, 8 months, his mom Misty Rohaly said.

"He underwent a major tumor resection surgery, six rounds of chemotherapy, an autologous stem cell transplant, 20 rounds of high-beam proton radiation and five cycles of antibody treatments," she added. "He is currently on a Bivalent Vaccine Trial at Memorial Sloan Kettering Cancer Center in New York."

Simon's wish was made possible by Make-A-Wish Greater Pennsylvania and West Virginia, the press release said.

Misty Rohaly said when Make-A-Wish (MAW) first contacted them, it was in the beginning of their journey.

"My husband and I turned it down because frankly, it scared us," she said. "In my head, I associated MAW kids with very sick kids, and even though the reality was that my kid was very sick, I refused to accept that he was sick enough to be a 'Wish Kid.'"

According to the Make-A-Wish press release, the most common misconception about Make-A-Wish is that it only provides wishes for dying children.

"To the contrary, Make-A-Wish fulfills wishes for children living with life-threatening medical conditions and believes that a wish experience fills its families with hope, strength and joy," the release said.

In October, 11 months into the Rohaly's journey, during Simon's radiation treatments in Somerset, New Jersey, the social worker at Procure asked if she could nominate Simon.

"I explained to her that he had already been nominated and that we had turned it down," Misty Rohaly said. "She sat us down and explained how it would impact our entire family and ultimately she emphasized that Simon deserves a wish after all that he (we) had been through.

"She also said his brother who is 5 years old and has gone to every single treatment with Simon deserves it too. At that point, we gave in. She was right. When a child has cancer, the whole family has cancer."

Simon and his brother Rio planned his wish trip to Disney World, which they took in April.

"It was magical," Misty Rohaly said. "Our whole family was treated like royalty. We did not wait in any lines for rides or characters."

She added that the experience was truly amazing.

"It was healing for our family to forget about doctor appointments, shots, hospital stays, etc. and just watch our kids be little boys," Rohaly said.

The Rohalys stayed in the Give Kids the World Village, which Misty Rohaly said says it all.

"Make-A-Wish Foundation will forever hold a special place in our hearts for all the good memories that they allowed us to make as a family," she said. "We hope to give back in some way since we know first-hand the positive impact that MAW can make on families like ours."

Since July 2016, Simon has had "no evidence of disease."

"He enjoys being at home and playing with his toys," Misty Rohaly said. "He loves being outside and he lives for swimming, either in the pool or the river. He can sit and throw rocks in the river all day."

Last summer he had a broviac in his chest which forced him to stay out of the water.

"Now he has a medi-port which is scheduled to be removed in July, so we look forward to swimming and splashing around this summer and just letting him be a care-free little boy," she said.

Misty Rohaly added that their son's diagnoses have taught them way more life lessons than they ever wanted or asked for.

"We learned to rely on our faith in God, who works all things for our good," she said. "We are thankful for the MAW foundation for giving us a trip that was unforgettable and so wonderful for our whole family."

Wishes like Simon's cannot take shape without a wish referral.

"We accept all phone calls in the office if anybody has an inquiry about it," Barbato said. "They can reach us at 304-292-5600. We also have our website with a referal form on it: greaterpawv.wish.org.

"We are always looking for referrals. If anybody knows of a child with a life-threatening medical condition between the ages of 2 and a half and 18, please give us a call. ... We are also looking for wish granting volunteers as well."

Email Kelsie LeRose at klerose@timeswv.com or follow her on Twitter @kleroseTWV.

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