Imagine pinching your nose shut and breathing only through a coffee straw.
"It feels like you have asthma and emphysema," said M'Leigha Graham.
The average human trachea, the windpipe that carries air to the lungs, is 15-20 millimeters wide. When Graham sought medical treatment in 2010, her trachea was measured at 4 millimeters wide - about the width of a coffee straw.
Graham is now able to talk about the damage to her windpipe, but telling the story isn't easy. She speaks with a raspy voice that strains easily. Strenuous activities like climbing stairs force Graham to slow down and take in extra air. Breathing is extra difficult when it's cold.
However, after a year with no voice, Graham said she is glad she can speak at all. She has only been able to use her voice since December.
Graham has tracheal stenosis – scarring and narrowing of the windpipe. She noticed symptoms four years ago, although the cause of her condition is unknown. What started as a dry cough sent her to operation rooms for surgeries and breathing treatments, and M'Leigha lost 45 lbs and some of her hair due to anesthesia. Graham underwent a procedure in January 2010 that reduced the width of her windpipe to the size of a pinhole, limiting Graham's speech to guttural noises. Her voice was gone.
The operations not only brought the risk of infection but also stressed the Graham family. During the year M'Leigha could not speak, her husband Frank and their three children learned to read her lips. Graham said her youngest daughter, nine-year-old Kiley, was so frightened to see tubes attached to her mother's voice box that she would not give her mother a kiss in the hospital. Riley, M'Leigha's oldest son, once called the 700 Club television show to pray for his mom. Graham said her inability to speak created awkward social situations, and strangers assumed she had throat cancer from smoking.
"This sickness affects anyone and it really doesn't discriminate," Graham said. "It's just something that you deal with on a daily basis."
The Graham family faced financial hardships from travel and tracheal stenosis treatments. A local church raised money, but bills continue to pile. Both Grahams worked as teachers, but M'Leigha left her job with the loss of her voice and has received disability payments for more than a year.
"The financial strain usually causes so much pain and trouble," Graham said. "For now we'll just live day to day."
M'Leigha received reconstructive surgery a year ago that made her participation at the summer 2011 Inheritance of Hope Legacy Retreat at Disney World possible. Her brother sent a referral to Inheritance of Hope on M'Leigha's behalf, and her condition had stabilized enough for her to walk and fight infections. Months later, M'Leigha received an email that stated her family would be registered for the Legacy Retreat in Orlando.
"It seemed like something that was a dream almost because I knew I could never take my kids," she said.
"When we first told our kids we were gonna get to go, I made a puzzle for them to put together, and they had to match all the words, and it said, 'We are going to Disney World,'" she said. "They were so excited."
At the Legacy Retreat in June, the Grahams met other families dealing with cancer and other life-threatening diseases. M'Leigha's three children got passes to go to the front of lines and enjoyed the amusement park rides without end. M'Leigha said they also bonded with the other kids on the retreat. Volunteers handled vacation photography, and the Grahams did not have to worry about expenses.
"It was so amazing that we didn't have to do our day-to-day grind," she said.
M'Leigha said the Legacy Retreat allowed her family to bond with others facing severe illnesses from around the country. M'Leigha said her children understand that they are not alone, and they still talk about the weekend and the families they met there. With a voice she has only been able to use for months, M'Leigha said: "It's really the trip of a lifetime. It changed our family, brought us closer together and just brought some fun back into our life."