9-year old faces rare kidney disease with hope, courage

When 9-year-old Emma Porter is not sitting on the tractor, she is baling hay and tending to cows, pigs and chickens.

Helping on her family’s farm requires energy and grit—two things Emma has plenty of.

She has come a long way since the summer of 2018, when she started having daily stomachaches, with occasional vomiting and lethargy.

The symptoms would come and go, making it difficult to pinpoint the cause, but when her face and eyes developed a yellow tint, Emma was sent to Atrium Health Levine Children’s Hospital.

Very quickly, she was diagnosed with atypical hemolytic uremic syndrome (aHUS).

“This is a rare kidney disorder with an incidence of only one per 2 million people,” explained Dr. Donald “Jack” Weaver, Emma’s pediatric nephrologist at Atrium Health Levine Children’s.

Nothing shakes a parent’s world like hearing their child has an extremely rare, life-threatening disease, but Colleen felt confident they were in the right place.

“From the moment we went in there, in spite of the fact that we had a very sick kid, we both felt like we were exactly the place we needed to be with the doctors we needed to be with,” Colleen said.

Emma spent nearly two weeks at Levine Children’s Hospital.

She underwent IV treatments, dialysis and multiple red blood infusions until her kidney function and hemoglobin improved.

Most of her time in the hospital was spent sleeping, but by the time she went home, she felt like herself again. And for the first time in weeks, she had the energy to play.

Today, Emma’s kidneys are healthy.

Although she will require medication for the rest of her life, major breakthroughs already have been made to treat aHUS.

This is in large part due to Levine Children’s Hospital’s participation in clinical trials to get new drugs FDA-approved, including one that’s helped Emma go from infusions every 2 weeks to every 8 weeks.

Colleen is optimistic that Emma’s life will only keep getting easier as medications change and more drugs become available.

In the meantime, she is grateful that Emma gets the highest level of kidney care in a kid-friendly environment.

“Something like a five-hour infusion shouldn’t be fun, but they make it so it is. Levine Children’s Hospital has created an environment people enjoy being in, despite the fact that they’re there for treatment,” she said.

When Emma was first diagnosed, Colleen was nervous.

“I spent a lot of time worrying about what her future would look like,” she said. Now, “We have zero concerns, zero issues. She does anything she wants to.”

Right now, Emma wants to be a kid and help on the family farm, but she has big plans for when she grows up. She hopes to be a surgeon and to help children just like her.

You can help children and families like Emma by supporting the Hopebuilders 5K.

The Hopebuilders 5K was founded 26 years ago by two local families whose children—both battling cancer—had to seek medical care outside of Charlotte.

Sadly, those children lost their fight to the terrible disease, but their families joined forces to help others facing similar challenges.

Since that time, the Hopebuilders 5K has become the flagship community fundraising event for Levine Children’s Hospital, bringing together more than 1,000 runners, donors, sponsors and advocates annually to support pediatric patient initiatives.

The Hopebuilders 5K exclusively benefits the areas of greatest need at Atrium Health Levine Children’s, allowing children and families to receive the best care where they need it most: close to home.

Since its establishment, the Hopebuilders 5K has raised nearly $3 million for patient programs at Levine Children’s Hospital.

To ensure the safety of patients, teammates and the greater Charlotte community, Atrium Health Foundation will transition this year’s Hopebuilders 5K to a fully virtual race and celebration.

From Sunday, Oct. 24 to Saturday, Oct. 30, Atrium Health Foundation invites supporters to set the pace and choose the place to help provide hope for patients of Levine Children’s Hospital.

Simply register for the Hopebuilders 5K and complete your own personal 5K or another activity of your choice during the weeklong event.

CLICK HERE FOR MORE INFORMATION OR TO REGISTER FOR THE HOPEBUILDERS 5K.

If you have an inspiring story to share, email Kevin Campbell, WSOC-TV/WAXN-TV/Telemundo Charlotte public affairs manager, at Kevin.Campbell@wsoctv.com.