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Focus on the 4State: Tony and Gabby Burgess

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Tony and Gabby Burgess discuss Gabby's battle against a rare disease Video: Focus on the 4State: Tony and Gabby Burgess
Tony and Gabby Burgess discuss Gabby's battle against a rare disease Wed, 22 Feb 2017 21:01:31 +0000 Focus on the 4State: Tony and Gabby Burgess Tony and Gabby Burgess discuss Gabby's battle against a rare disease WHAG our hearts reporting will berkley springs, carolyn blackburn. >> what an inspiring girl. we are joined by gabby and her father. thank you. >> definitely. >> my first question is for gabby here. it's a rare condition that you have. have you ever met anyone else in your life that deals with it. >> no. >> one of a kind at least for this area. >> how is it to have a child like this? >> it's a very interesting struggle. there is not a lot of information about it. it's such a rare disease. they can't really find much data. >> yeah, definitely. so any parent really has to be cautious and observant when around their children no matter who you are. but when you have a child battling a disease like that, how more important is it to be observant. >> we try to stay very cautious. and say very observant and we also want her to live her life and be a kid. >> how important is it to walk that line? be cautious and give her that freedom to roam and explore. >> it's tough. we want her to live life to the fullest and we also know that we have to follow as well. >> what are some of the boundaries? >> a lot of the things that the doctor says, live her life but keep her away from soccer, rugby, even getting her ears pierced, it has to be medically done. we can't just go to a basic piercing shop and get it done. it's small things that a lot of people take for grante and don't realize that can actually be an injury for her. >> so really with how important is it to know what you're doing as far as healthcare and health insurance? >> it's extremely tough, one of the biggest challenges is we don't have a lot of chart codes for her condition. we had to go with a lot of different struggles dealing with the hospital and health insurance just to get some basic coverage with her. even when it comes down to medicine, medicine is very very hard to get preapproved for anything. so even with her previous surgery she just had, we didn't have any protection or coverage at all, up to 24 hours prior to the surgery taking place. >> that has to be scary. having no backup. >> yeah, very, very scary. >> and how has it been to get her interested in things or it comes off naturally? she doesn't even care. >> oh, she is full of energy. outside of knowing she has the condition, you would never know it. she is a normal 5-year-old girl. >> how long has she been battling it? >> we found out -- we started running into the issue in august of last year and was not diagnosed until she turned 5 in december. >> it's relatively know knowing with how things going with this condition and how to live your life really. >> absolutely. >> so what kind of reputation does she had around the dance group with her friends, with her parents. >> she is always a big bubble of energy. everyone just loves her. >> i can tell. >> has a lovely personality. she is very well loved amongst her friends, family, church goers and everybody and she melts everybody's heart. >> i can see that. gabby, what got you interested in the first place? what's the most fun part about going to practices? >> i really like it because we don't have to do it in front of everybody. and yeah. >> yeah. well we love seeing you out you're a completely energetic girl and bubbly like you said. what is maybe the one thing that you wish other people knew? this isn't a relatively well-known condition. what do you wish other people would know about this? >> there is a couple of things. one is, she is still a little girl. there is a lot of things that she can still do without any problems at all. even though it's a life-long illness, it's not something that she can't manage over time. another thing that really seems important is we know there are parents that are struggling with children of their own and may have diseases. and we want to empower them to let the kid be the kids. >> and my last question for gabby. what inspires you to keep going every day? >> because i am very happy. >> it definitely shows. thank you gabby.reciate it. >>> coming up,

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