Community To Hold Fundraiser For Skiatook Man Diagnosed With Rare Disorder As A Child

Community To Hold Fundraiser For Skiatook Man Diagnosed With Rare Disorder As A Child

The pandemic has led to a lot of people keeping six feet of space between themselves and others, but one young man from Skiatook said he's always been health conscious. 25-year-old Robert Bushyhead was born with severe combined immunodeficiency, often called the "Bubble Boy Disease." 

"I have no immune system. I'm a boy in the bubble,” said Robert. 

Being the boy in the bubble hasn't been easy for Robert and then you factor in a global pandemic and a recent cancer diagnosis. Robert said he might be physically weak, but his strength comes from God. 

Even before the pandemic, when flu season rolled around, Robert Bushyhead and his mom Tamie McDermott would quarantined. 

"When everybody started complaining about it, on our social media post, we put we got this SCID moms and SCID kids know what to do,” said Tamie McDermott. 

Houseguests must comply with strict rules like not wearing shoes in the house, and the only public place Robert visits is his doctor's office. He takes roughly 26 pills a day, plus two shots and an infusion weekly.      

"He is my hero and I think that I tell him all the time that he's the bravest person that I know,” said McDermott. “Because since he's a been little, he's known, we’ve had to teach him that you've got to protect yourself. And just living the isolated life that he has, he keeps a smile on his face, and he told the first doctor, he said, ‘I'm gonna beat this. I will. It is just a bump in the road,’ and that is how he is. With anything that he's ever had to confront." 

Robert's Aunt said she couldn't agree more. 

"He's an everyday hero. He does inspire a lot of people. And my sister, she's a saint. I strive to be like her,” Lisa Roberts. 

The pandemic presented unique challenges for McDermott who had to quit her job as a nurse to stay home with Robert while Robert's stepdad moved out, so he keep working in the medical field. 

Over the summer, Robert found out on top of all his other health conditions, he also had a rare and aggressive form of lung cancer. This came two weeks after learning he needed a 4th bone marrow transplant. 

"His primary immunologist said, ‘Well, we can't do the transplant for your immune system now because it's an active malignancy so you're not in our protocol. You're excluded from that.’ That was really scary knowing that his immune system was even lower than what he had been living with and needed a transplant. And then going to Duke University to start chemo to knock out even more of his immune system which would probably bring it down to nothing. It was just really scary," said McDermott. 

McDermott said medical professionals had several meetings to discuss the safest way to even treat Robert. 

"The chemotherapist, the radiation doctor, and the immunologist all were scratching their heads,” said McDermott. “He was setting a path. They didn't really know how he was gonna react.” 

Robert said his life as a SCID kid who has cancer during a pandemic is a scary guessing game. 

"Positive thoughts, positive words are real. Really does affect outcomes. At least in my experience. Prayer too. Prayer is important,” said Robert. 

But even Robert says it could be worse. 

Robert traveled to Duke University for radiation treatment but was able to home to for chemotherapy. 

"I came back because I wanted to be around my pets and my family. I value those things very highly in my life. My support system is amazing here,” said Robert. 

Rooster Pen RC is holding a benefit Friday night at the Jack of Clubs in Collinsville to help with Robert's medical expenses. The fundraiser take place from 7 p.m. to 10 p.m. It includes a taco bar, costume contest, karaoke contest, 50/50 tickets, raffle tickets, and a silent auction.  

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