After sudden ailment, family says daughter healing amazingly wellHannah Manche’s family and friends describe her as a spunky, tenacious, loving 7th grader, who’s hoping and praying she’ll be home from the hospital by Christmas.
By: Debbie Griffin, River Falls Journal
Hannah Manche’s family and friends describe her as a spunky, tenacious, loving 7th grader, who’s hoping and praying she’ll be home from the hospital by Christmas.
Hannah continues to persevere through a bout with a one-in-a-million and potentially deadly skin disorder that blistered her body inside and outside.
Hannah’s mother, Kathy, said her daughter’s ordeal started after she reacted to antibiotics.
Her eyes turned red, a pinpoint rash appeared on her chest. Her heart rate accelerated and she developed a fever.
Hannah’s dad, Johnny, said of the rash, “It got worse really quick.”
Kathy said, “We could just watch the rash grow.”
As it spread, their daughter’s fever spiked and heart rate soared, so her parents admitted her to the River Falls Area Hospital the Sunday after Thanksgiving.
Within hours, they said doctors became sure it was Stevens-Johnson Syndrome (SJS).
The Manches took Hannah to United Hospital in the Twin Cities, which soon recommended she go to Regions’ specialized burn unit.
Kathy and Johnny say each step of the medical decision making was crucial to their daughter’s health.
Her skin had begun to severely blister, leaving her dangerously susceptible to infection.
SJS is an uncommon skin disorder in which less than 30% of the skin and/or mucous membranes blister and/or detach.
Hannah’s condition worsened into toxic epidermal necrolysis (TENS) and affected her entire body, inside and out.
Her parents say all her external skin — from head to toes — blistered and peeled.
Medical staff had to shave Hannah’s curly dark locks. She lost all her fingernails, too.
Kathy said, “She also blistered internally,” explaining that the TENS affected her daughter’s eyes, throat, nose and basically all mucous membranes.
After about a week, the blistering finally stopped.
The Manches had never heard of TENS before it struck Hannah, but they’ve learned a lot since then and think the information is worth sharing.
The parents say an antibiotic triggered their daughter’s reaction, but the ‘cause’ or trigger of the disorder differs from person to person. They say Hannah will certainly never take anything in that antibiotic’s family again.
Johnny said, “Every case is different, because everybody reacts differently.”
They also learned that once a reaction starts, there is nothing to do but let TENS run its course and treat the blistered skin with burn-healing techniques.
Hannah’s case is literally one in a million.
The United States has about 300 occurrences of TENS per year against an overall population of about 307 million.
The Manches said their daughter, also a diabetic, has healed amazingly well and quickly.
The family believes many small miracles have happened right inside Hannah’s hospital room, thanks to the prayers of family, friends, even strangers.
Before she can come home, Hannah must be able to eat.
It has hurt too much, so she continues getting high-protein nutrition from a feeding tube while working with a swallow therapist.
Johnny and Kathy said on Friday that their daughter scored a small victory the day before: Hannah ate cream of chicken soup. She whispered to her mom afterward, “I’m so grateful for soup!”
Two other big concerns are Hannah’s eyes. Kathy says her corneas sustained damage from the blistering, and doctors cannot predict how much they’ll heal.
When Hannah opens her eyes, she can see shapes and light. She hadn’t been able to talk either but has begun whispering a few words here and there.
The 12-year-old is now growing new hair and skin. A “biobrane” covered her body for a while, which is a kind of artificial skin that protects the body surface, holds in moisture and encourages growth.
“When she started growing skin,” said Kathy, “we were praying that the blistering had stopped.”
The Manches say they take it as a good sign that doctors are offering them options as part of the progress report(s).
Her mom said about Hannah, “She’s been remarkable through all this,” adding that she’s shown astounding strength and hasn’t whined or complained about anything.
Grass roots grow
Kathy and Johnny say they’ve been overwhelmed in a good way by the thoughtful, prayerful and considerate reactions to their family’s situation.
Kathy says her other two daughters, 9th grader Sarah and senior Kasey, have been caring for the household and going to school plus coming to see their sister. The Manches say Hannah’s sisters have really “stepped up to the plate.” Kathy said Hannah often asks for her sisters’ company.
People from the family’s church, First Covenant, have brought meals, cleaned house, washed laundry, arranged for shoveling and plowing when the need arises and even offered animal care.
People at both girls’ schools have organized efforts of support, selling Hope for Hannah bracelets and having a ‘hat day’ plus other fundraisers. A relative in Florida created a fundraising Web site for Hannah.
Johnny said he’s been struck by the acts of kindness, some from total strangers, “We didn’t ask for any of this, just prayers.”
“Everybody’s thinking of everything,” said Kathy. “Thank you just seems inadequate.
Denise Horsman, a counselor at Meyer Middle School, said Hannah is a great student with a great deal of courage and a positive attitude. She explained how the 600 students organized on their own and generated $1,600 for the family.
The Manches said the money comes in handy to cover gas expenses for travel to and from the hospital.
Kathy said Hannah’s days are fairly full and usually leave her tired. Her family helps her pass idle time by reading to her — cards, sentiments from the Caring Bridge site and books.
Sometimes Hannah likes to listen to a favorite and familiar movie. She’s listened to a few books on disc plus has visitors.
Her mom says she can’t have large groups since, technically, the burn unit is an intensive-care unit.
The Manches reiterate their gratefulness for all the support and say to keep the prayers coming.