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Tuesday, May 6, 2014

Matthew's Parents Tell Their Story

Tune in to 1490 WESB at 12:30 p.m. Wednesday to hear Tom & Susan tell their story.

By SANDY RHODES

There’s something about Matthew Whelan.

The now 8-year-old sprite from Bradford was born with spina bifida and although he has been in a wheelchair, he commanded the attention of those in any room he entered. He reached out to people and could make them smile.

“Matthew wanted people to see him for who he was inside despite his disability,” said his mother, Susan Whelan- Bruno. “Matthew understood what the most important thing in life is and that is people are here to spread love to one another and he knew that.”

And that was just what Matthew did, whether it was a trip to Dairy Queen, attending church or his involvement in midget football or the Boys Youth Basketball League.

“Matthew was full of so much energy. He absolutely loves people,” his father, Tom Whelan said. “He loved to play catch with a ball and had a really strong arm.

“He had so many friends I had no idea where he met or knew so many people. People had an instant attraction to him and it was because of his beautiful heart. I cherished any time I had with him. He had a beautiful smile and a great laugh. He was really funny and he said he had a lot of girlfriends ... He told everyone around him that he loved them every day, even people that he just met.”

And even though his world – as well as his family’s - changed forever last fall, he is still inspiring others.

In September, Matthew’s VP shunt, located in his brain, started to malfunction. A few weeks later, the boy who had been through so much already in his short life, suffered a stroke, which led to emergency surgery and the removal of part of his cerebellum, which controls a person’s coordination.

Since then, while his physical condition changed dramatically, “his love is still there,” Whelan said. “He cannot speak and only swallows occasionally. He has very limited movement of his arms and legs …”

He is fed formula through a feeding tube and is on a ventilator at night to help with his breathing. He has a tracheotomy that requires changing once per week. His condition requires intensive care. That has become overwhelming.

“Before, Matthew could hold his head up and help” when his mother was taking him in and out of his wheelchair. “Now, he is dead weight.”

“I am overwhelmed and don’t get much sleep,” Whelan-Bruno said. “The whole family (including three half siblings and a stepfather) have been affected. “It’s tough, but we do what we have to do.”

But much of what needs done is out of the family’s control. Neither parent’s household is equipped to handle the special care he needs now. His mother and stepfather, David Bruno, rent their house, so they cannot make any changes, such as a installing a wheelchair ramp or making the shower handicap accessible. And since Matthew’s parents live in different households, insurance will not pay for medical equipment for both.

“Hospital equipment is very expensive and we have had to share it and transfer it from her house to mine when he visits,” Whelan said. “It is too expensive to purchase the required medical equipment out of pocket. Frequent visits to the Children's Hospital and Children's Institute in Pittsburgh have been very costly for gas, food, and sometimes lodging.”

“I fight with the insurance company,” Whelan-Bruno said. “They used to compensate you for travel, now they don’t.”

And even though Whelan-Bruno had some help from medical assistance is cutting back on those too. She gets some breaks when he is at school at George G. Blaisdell Elementary School, but much of Matthew’s care has been left to his parents.

“They feel if the parent is home then the parent should take care of the child and be trained to cover all the medical needs,” she said.” I am certainly not experienced or qualified to handle when Matthew's oxygen levels decrease or needs continuous suctioning. Matthew is on the ventilator throughout the day depending on what kind of day he has had. Matthew is always on the ventilator at night.

Caring for Matthew is a “two-person job and it requires all-consuming care.”

But with all the financial struggles of trying to care for Matthew, perhaps the biggest struggle has been losing a big part of who Matthew is – his sense of humor and his capacity to love.

Whelan-Bruno misses her “buddy” – the little boy who would extend a short trip to Walmart into an hour long journey of meeting people and spreading love along the way.

“He’s quite a kid and has done a lot more than the average person before this happened,” she said. “He was happy all the time; I miss that. He’s my buddy. I miss talking to him.”

“As his father I have struggled daily with the emotional aspect. I miss his laugh and him telling me he loves me. It is absolutely heartbreaking,” Whelan said. “God has kept him alive to spread love. Matthew has done that better than anyone I have ever met.”

But for now, the family is left to wait and see how much of Matthew comes back into their lives.

“I don't think he will get completely back to where he was. I pray every day that he heals and isn't suffering. I pray for a miracle. I know that it’s a miracle that he is still alive but would love to see him back.”

“With a traumatic brain injury, we just wait and see,” Whelan-Bruno said. “We keep stimulating him and hope for the best.”

But even if they get just one small thing back, it would mean the world to this family.

“We want his beautiful smile back,” Whelan said.

Photo courtesy of Susan Whelan-Bruno

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