GREEN BAY, Wis. (WFRV) – May 15 is National Lymphatic Malformation Awareness Day and 14-year-old Mackay Campbell wants to educate as many people as she can about the condition that she has had since before birth.
“My condition is called Lymphatic Malformation or LM for short. It’s basically the cells in my lymph notes that are mass produced,” said Mackay. The condition causes overgrowth and swelling in the tongue, jaw and cheeks that is caused by cysts. There is no known cause of this and treatments can be difficult. “The awareness, you know it’s an incredibly rare condition,” said Connie Fellman. Connie is an anchor and reporter at WFRV Local 5 and wanted to provide a window into her daughter’s life.
“We had been trying for a long time, and we had some struggles along the way, as many people do,” said Fellman. At 39, she was considered a high-risk pregnancy which required a specialist. “I was so careful with my pregnancy, with my health, and with everything,” said Fellman. At 20 weeks, the Doctor noticed something wrong and ordered additional testing. “That is when we discovered she had something going on,” said Fellman.
Dr. James McMurray, was Mackay’s physician. “We were able to partially delivered Mackay just her head and her torso, leaving her still attached to her mom’s placenta through her umbilical cord,” said McMurray. A team of Doctors at UW Madison performed a procedure to assist in Mackay’s breathing because the condition can cause swelling of the throat which can obstruct her airway. “We were able to evaluate her airway before we finally cut the cord, so to speak. We secured her breathing passage before she was completely born,” said McMurray.
A tracheostomy tube was inserted into her neck, connecting directly to her lungs. Usually people who have a trach are unable to speak, but not Mackay who’s beaten the odds not only by speaking but singing as well. Mackay performs regularly as a singer and musician.
Why is the option to have plastic surgery not on the table when there are so many technological advanced that we’ve seen over the last few years. “The Lymphatic Malformation goes through her entire face and into her tongue and voice box. That would involve involve removing just about everything, which in lies the problem,” said McMurray.
Mackay’s dad David did something that he doesn’t recommend to anyone, by turning to the internet for medical advice. “I guess I was feeling how anyone else would feel. It was a little scary, and I did the same thing…a lot of internet research. I was trying to sort out what it was,” said Campbell. He had never heard of that condition before.
Her unique appearance is one of the reasons Mackay would not change if she could. “I just want people to know that I’m the same. I look different, but act the same. I am a normal fourteen year old teenager,” said Mackay. She also wants to be a voice for the disabled community. “Speaking as part of the Disabled Community as a whole, I think we all would say the same thing.”
Mackay has a close circle of friends who are inspired by her daily. “I think Mackay serves as a really good inspiration to me. She’s very strong and passionate about what she loves,” said Jenelle Andrus. Andrus and Mackay have been friends since the sixth grade, when they bonded over lunch. “I really didn’t notice anything different. She’s the same as everyone else,” said Andrus.
This vibrant and confident teen, continues to teach her mom Connie every day. “Just to see what she has gone through, all the challenges she has faced in life. She continues to be positive, with a loving outlook on life. Her perspective is what we can all learn from,” said Fellman.
Not allowing her disability to define her, Mackay hopes everyone will judge less and educate themselves more. “A lot of people are a lot nicer when they’re educated because they know what’s going on,” said Mackay.