WEST BEND, Wis. - Part of the joy for new parents is looking forward to all of the milestones their child will reach, but watching her son grow up is exactly what scares Kristin Rathmann.
On February 27, 2017, Kristin and her husband Chris welcomed their second boy, Henry, into the world. It would take months before they learned Henry suffers from a rare genetic skin disorder called epidermolysis bullosa - "EB" for short - most commonly referred to as "the worst disease you’ve never heard of."
“We had never heard of it,” Kristin said. “The doctors had never heard of it when he came out.”
Kristin and Chris had no idea they were both EB carriers and that their children had a 25% chance of being diagnosed with it, FOX 6 reported.
“They call them 'butterfly children,' because their skin is as fragile as butterfly wings,” she said.
Patients with EB lack a special protein in the body that holds their layers of skin together. A minor fall or bump can result in major scabs or blisters. Hot temperatures make it worse. The skin is so fragile that even sleeping causes extreme pain.
“The REM sleep makes your eyes shake a little bit,” Kristin explained, "and that little slight friction creates erosions and abrasions. Then in the middle of the night, he will be screaming bloody murder.”
Only 200 babies are born each year in the United States with EB, and there is little information known about how the symptoms will appear in each individual. This means Henry's treatment comes down to a lot of trial and error.
Related: Scientists replace skin of 'butterfly child' with rare genetic disease
“Whenever you think you’ve solved something, you find out it just doesn’t work or you have to modify it. It messes a lot with you,” Kristin said. “It is so malicious. There's not one aspect of our life that it has not done something to.”
Kristin had to quit her job as a teacher to provide around-the-clock care. She and the kids rely solely on Chris’ income as a police officer for the Maple Bluff Police Department in Madison.
This story isn’t about all of Henry’s limitations. It's about the limitless generosity of the community.
“It just kind of grabbed me. Grabbed my heart,” said Jackie Fecther.
Located 60 miles northwest of Waterloo, Fechter owns a 58-acre tree farm in West Bend called Christmas on Indian Lore. After reading about Henry's diagnosis through friends on Facebook, she decided to ask her customers to donate to Henry’s ongoing medical-related costs.
Her customers answered the call. Over the holidays, the donations poured in.
“I had no idea it would go where it did,” Fechter said. “I had one lady come back three times. She just kept putting money in the jar. This probably was one of the most special Christmases.”
Fechter raised $11,000 for a family she had never even met.
If you’d like to help fund Henry’s ongoing medical expenses, the Rathmanns have set up a number of ways to donate.
Mailing address:
For Henry
PO Box 402
Columbus, WI 53925
Email: forhenryrathmann@gmail.com
Venmo: For-Henry
