By Jennifer Eisenbart
Editor
Like many high school seniors to be, Hannah Manche is starting to look at where she wants to attend college.
Her motivations are probably different, though.
Manche wants to become a burn-unit nurse, using the experiences of her teenage years to help others.
The 17-year-old River Falls resident’s experience comes from an encounter with Stevens-Johnson Syndrome – a rare, serious disorder of the skin and mucous membranes. The disease blistered off all of her skin, caused blistering internally – and left her blind for almost a year.
When Hannah was 12, she suffered from the most severe form of the disease, Toxic Epidermal Necrolyis Syndrome. After just two doses of doxycycline, which doctors prescribed to her thinking she might have Lyme disease, Hannah began to suffer burns all over the outside of her body – and the inside as well.
“It was a nightmare when we were going through it,” said Hannah’s mother, Kathy. “First we were pleading, ‘please let her live.’ Then we were pleading, ‘please don’t make her blind.’
“Then the pain issues,” Kathy added.
Now, though, thanks to special corrective contact lenses, Hannah can see. And thanks to Wishes and More of Minnesota, Hannah got to check an item off her bucket list this past week – getting to ride in a hot-air balloon.
“It was a lot of fun, and really cool getting to see things from that far up,” said Hannah, who was a special guest at BalloonFest in Waterford Friday through Sunday morning.
She, her mother and her father, Johnny, got a chance to experience as much as possible at the festival, getting VIP treatment from the support staff, a helicopter ride and free wristbands for the various carnival rides.
“It was a really awesome experience,” Hannah said. “It was a lot of fun.”
A nightmare time
Hannah has come a long way from the 12-year-old in the burn unit at Regions Hospital.
She was wrapped in BioBrane, a biosynthetic second skin which would help her regrow her skin and hopefully ward off infections. She was, in essence, a burn victim.
Hannah was put on a ventilator – “because my lungs were blistering up,” she explained – and placed in a medically induced coma for five days as doctors hoped to relieve her intense pain.
Instead, she suffered from severe hallucinations.
“Everything’s kind of a blur,” she said of that time.
When she awoke, the first thing she remembered was her family being all around her. They wanted to know if she could see.
“They kept asking could I see anything, could I see anything – because they were told I was going to be blind,” she remembered.
Hannah could, but mostly shapes and colors. It was, as she described, like “looking through broken glass.”
When she first looked in a mirror, though, she saw more than she could handle – her head bald, scarring from the burns all over her body.
“Waking up to see a whole new face and a whole new body was really difficult,” Hannah said. “That’s really hard on a middle schooler.”
There were other problems. She spent a month in the hospital, and was on a feeding tube for several months after she was discharged.
And while Hannah could see to some extent, the majority of her vision was lost for the better part of a year. There was also intense pain in her eyes, as her corneas had blistered, Kathy explained, referring to that pain as feeling like sand being constantly blown into one’s eyes.
Her eyes also no longer produce tears.
“Like a small fire in your eye,” Hannah added, saying the pain rates an eight on a scale of one to 10.
A different view
About a year after the incident, Hannah got special contact lenses that cover her eyes and hold in saline solution.
Those lenses allow her to see at about 20/30 vision.
As Hannah healed, she found out about the Wishes and More program, which grants wishes to ill children fighting a terminal or life-threatening condition.
Hannah’s first wish, taking a trip to the Dominican Republic and swimming with dolphins, was granted. Since then, she’s volunteered with the group, making speeches to not only talk about her experience, but to advocate for awareness of Stevens-Johnson Syndrome.
One of those speeches took Hannah to the Wishes and More fundraising gala in February. She filmed a short piece talking about her priorities now.
“One of the biggest things I talk about in my speeches is, after I got my sight back, how I started to take advantage of all the colors and sights in the world,” she explained.
A couple at the event wanted her to attend BalloonFest this year – and then made it happen.
“We’re grateful Waterford’s giving her this opportunity,” Kathy explained, adding that it gives Hannah – one of her three daughters – a chance to advocate for awareness.
After the weekend, Kathy remained just as grateful.
“We had a really good weekend,” Kathy said. “We went out not real sure what to expect. But we had a good time, and they made Hannah feel special.”
Moving forward
Hannah’s journey is not over, something her mother and her both stress. Aside from the pain issues, Hannah will never be fully healthy again.
Also, as she healed, Hannah discovered one of the other sources of pain – the reaction to the change in her appearance, both to her eyes and to the scars that remain from the burns.
She admitted to having been bullied. Last week before coming to Waterford, she was harassed by a group of drunken young men. As those reactions continue, both Kathy and Hannah admitted it gets difficult.
But after the incident last week, Hannah took to Facebook to offer her thoughts.
“I want to say that I know I don’t meet society standards of beauty,” she wrote. “I know I’m too big. I know my eyes are weird and deformed. I know my skin is blotched and gross. I know my face is too chubby with no feminine angles.”
Kathy said that her daughter has taken the positive from the incident, and “is very mature for her age.” But she also stresses the family’s faith in God.
“She’s come a long way,” Kathy explained. “When you got through something like that, you say, ‘Why God, why?’ He’s the one in control. I’m going to trust him when it’s good and when it’s bad. That was a big part of her struggle.”
Now, perhaps, not so much, as Hannah said in her post.
“God never makes mistakes,” she wrote. “His creation is beautiful.
“I am beautiful.”
-
-
-
-
-