ALBURTIS, Pa. — When Brenda Marra hikes in the woods with her 5-year-old daughter, Renna, the hike doesn’t look the way she once imagined.
But it’s no less beautiful.
Renna, who has Pitt-Hopkins syndrome, a rare genetic disorder that affects mobility and communication, rides tucked against her mother’s back in a special hiking carrier built to hold up to 150 pounds.
Mother and daughter move along the trail at their own pace, teaching Marra a lesson she didn’t expect: Resilience doesn’t always mean moving the “normal” way — it means accomplishing things their way.
It's among the many activities in which Marra and Renna, who will turn 6 on Leap Day, partake, along with the young girl's equine therapy and music therapy classes.
Now, Marra and her family are raising funds through Dec. 31 on the website SupportNow.Orgfor a trained guide dog to help Renna with tasks such as mobility assistance, behavioral calming before sensory overload, and an anchor in overwhelming environments.
A trained guide dog for Renna
When Marra first began researching service dogs for her daughter, the idea grew from a moment with her own pups — sitting with her Jack Russell terriers and realizing how much comfort a dog could offer her daughter.
But the search wasn’t easy: long waitlists, programs that only served adults and organizations focused on seizure or vision alerts didn’t fit Renna’s needs.
Then Marra found 4 Paws for Ability, a nonprofit based in Ohio that she recognized from the Pitt-Hopkins community in which she finds support.
“They would do everything we needed,” she said of 4 Paws.
After a phone interview and acceptance into the program, Marra learned she would be trained as the dog’s handler, while Renna would be the recipient — a match chosen by the dog’s abilities.
The right dog, likely a golden retriever or Labrador, eventually would help keep Renna safe, stable and close by in crowded spaces, act as a social bridge with other children and even support her physically when she falls.
"The dog can give her more independence,” Marra said, “instead of me literally chasing her around trying to hold her hand.”
Even though Renna has trouble communicating verbally, her mother said she's an extrovert at heart.
“She’s non-speaking, but not non-verbal,” she said.
“Renna communicates in her own ways, and she’s said some words. She loves people so much, and I've seen her bring so much joy to people.
"We will be at therapy or in a waiting room, and she will literally go greet every single person in the waiting room."
A rare diagnosis and resilience
Rena was born on Feb. 29, 2020 — just a week before the world shut down for the coronavirus pandemic.
She was diagnosed at age 2½ with Pitt-Hopkins, which, according to the Pitt-Hopkins Research Foundation, currently affects 1 in 225,000 to 1 in 300,000 children worldwide.
“Some kids walk earlier, some not at all. Renna didn’t start walking until she was four and a half.”Brenda Marr
Many children with Pitt-Hopkins also experience seizures.
Though, so far, Renna has been fortunate in those areas, she faces significant challenges with communication and motor control.
“There’s a spectrum,” Marra said. “Some kids walk earlier, some not at all. Renna didn’t start walking until she was 4 1/2.”
Marra said the family has worked with specialists in the Lehigh Valley and a genetic specialist at the Pitt-Hopkins Clinic at Mass General Hospital in Boston, Massachusetts.
"She was the 102nd child he had seen in all of his years of being a Pitt Hopkins specialist," Marra said.
Over the years, Renna has received early intervention services — including speech, physical and occupational therapy — as well as outpatient speech therapy and specialized support to help her navigate communication challenges.
“Documenting her journey has really helped me see all the positives in all of this."Brenda Marr
Through her social pages, Renna’s Corner, which has drawn thousands of followers on Instagramand Facebook, Marra documents the small moments that reveal her daughter’s resilience.
“Sometimes I’ll look back at a Reel I made and think, wow, she was looking right at me,” Marra said.
"You could see she was understanding… something was clicking.
“Documenting her journey has really helped me see all the positives in all of this."
'Positively impacted'
This month, Marra, in partnership with Funds2Orgs, a national organization that pays groups based on the total weight of gently used shoes collected, held a fundraiser at the Alburtis pool parking lot.
Marra had no idea just how overwhelming the response would be.
"We didn’t even have time to count the shoes,” Marra said.
“We ran out of bags. Every time we thought we were caught up, more people walked in with more shoes.”
The event — originally intended as a one-day collection — has now grown into a community-wide fundraiser with people across the Lehigh Valley continuing to donate directly online to help the family raise the funds needed for Renna's future service dog.
“Renna’s story has positively impacted people,” Marra said. “It’s given them something to be passionate about.
“We would not have reached so many people without this shoe collection. It’s allowed us to share Rena’s story in a way we never expected.”
“It’s given people who don’t even know us something to care about. And that means so much to our family.”
To learn more about Renna's journey and how to donate, visit the family's SupportNow.Org page.
