Walking with Hannah
Hannah is very bright. She graduated high school when she was 16 years old and enrolled at Pearl River Community College (Poplarville, Miss.) three days later. Her dream is to teach science or art at a school for deaf children.
But her journey is more impressive than her destination.
Five years ago, Hannah and her family were walking around a store when, all of a sudden…she could no longer walk. Heather, her mother, knew it was serious.
The family lives in a small town in Mississippi, so they traveled to New Orleans for Hannah’s initial medical care. The answers were not good.
Hannah was diagnosed with Complex Regional Pain Syndrome. CRPS is uncommon, particularly in children—she is the youngest person ever diagnosed in New Orleans and most doctors have never treated it. Its cause is not fully understood and the pain is disproportionate and debilitating. Hannah started water therapy and needed a wheelchair for an extended time.
“Doctors told us she would never walk again,” said Heather. “But Hannah is not one to give up—it’s not what she does.”
And her condition worsened.
Hannah was hospitalized for pneumonia and heart complications on multiple occasions. Communication stopped in her body and her organs suffered—appendix, gall bladder, lungs, heart, stomach; it was time for more answers.
Hannah and her mom packed for New York, but doctors in The Big Apple said Mayo Clinic in Rochester was where she should receive care.
The referral was vital—Mayo discovered Hannah has Von Willebrand Disease, which is similar, but differentiated from classic hemophilia. The bleeding disorder is typically mild and relatively common…in adults. The discovery simply added more questions.
“It is not found in children,” said Heather. “And she was 13 when she was diagnosed.”
The result was regularly scheduled trips to Rochester for blood infusions, symptom assessment, and medicine treatment in 2017.
After creating a plan with her care team for regular appointments only beginning in 2018, Hannah developed anaphylactic reactions and was diagnosed with mast cell disease. Mast cell disease is rare and people with the condition experience unexplained, severe allergic reactions.
The result was more trips to Rochester.
Heather and Hannah have stayed at the House nine times for more than 100 total nights. And they learned about the Ronald McDonald House on their first trip.
“All I knew about the House was that it is an inexpensive place to stay,” said Heather. “But I quickly learned…it’s so much more.”
“The House is so welcoming,” Hannah said. “They are genuinely interested in me.”
The side effects Hannah experiences are significant—she wears a mask in public, she had feeding tubes for a while, she uses a walking stick or a wheelchair for mobility. She was discouraged. But the House was a refuge for her.
“It’s my favorite thing about the House,” said Heather. “No one asks why she is wearing a mask or why she is in a wheelchair. She can be a kid.”
“She feels like she belongs.”
Hannah thrives in the House. She loves playing video games and creating masterpieces. She describes both activities as “great escapes” from her medical issues. And when she walks into the House after a long day: “I check my mailbox!” The handmade cards and gifts are very meaningful and lift her spirits.
And she is always greeted with a smile and a “welcome home.”
“It helps me forget about the hard things I went through that day,” Hannah said.
Hannah has made lifelong friends while enjoying House Dinners as well.
“I have friends from Alabama, California, Illinois, Iowa, Kentucky, Minnesota, and Montana—literally all over the country,” said Hannah.
“And it’s not Facebook friends,” Heather said. “They are true friends. One family in Minneapolis picks us up from the airport, hosts us at their home, drives us to the House in Rochester, and drives us back to the airport when our stay is over.”
And friends are not the only family Heather and Hannah found at the House—volunteers are the heart of the House.
“I will be drawing alone or playing a game alone and a volunteer will come in and start drawing or play with me,” Hannah said. “They invest in me. It makes me feel special.”
Heather and Hannah recall a college student who would spend every night with her…and another who gave Hannah the shoes off of her feet on a wintry night in October.
“She was walking around in the snow without proper shoes,” said Heather. “I will never forget what she did for my daughter…”
“The volunteers are truly incredible.”
“I am more than an illness,” said Hannah. “They see me.”
Heather and Hannah experienced the House before the expansion…which means they also experienced waiting for a room. But the Ronald McDonald House of Rochester completed an expansion in 2019—the 70-room House is the largest House in Minnesota, 13th largest in the country, and 18th largest in the world.
The expansion will make the wait time significantly less.
“I want more kids and parents to experience the House,” said Hannah.
“No wait list will help families…financially and emotionally,” said Heather.
Heather said her husband always asks are you in the House yet because he is confident in their living situation and he knows they are safe when they are staying at the House.
The House was expanded and is sustained by many generous donors.
“The generosity in Rochester is overwhelming,” Heather said. “Some donation plaques have business names, but some have family names. Another family is supporting my family.”
“It’s very special.”
“Often times…people do things for others because it has personal benefit,” said Hannah. “But not here—not in Rochester and not at the Ronald McDonald House. They do it for me.”
Hannah is on a long journey. Her medical team will remain with her until she is 22 years old and have transition plans in place for a local doctor—specialty care will no longer be necessary. Her dream is to live independently.
But as Hannah knows…every journey begins with a single step.
“I’m excited for her and her future—a future made possible by Mayo Clinic and the Ronald McDonald House,” said Heather.
Heather and Hannah describe the Ronald McDonald House as their family. Welcoming. Kind. Generous. Supportive. And so much more.
“I do not know where we would be without the House,” said Heather. “It would be hard. We have so much gratitude.”
“Hannah is not simply surviving…she is thriving.”
Hannah shared an update in the August 2022 edition of News from the Heart