'Hope is our Future': Burlington family raises awareness for Rett Syndrome

Together the family has become advocates for Rett Syndrome, a rare genetic mutation affecting brain development in mainly girls.

Rett Syndrome 101

Rett Syndrome is caused by a gene mutation, MECP2, and is rarely inherited, according to the International Rett Syndrome Foundation.

Only 1 in 10,000 females are affected with Rett Syndrome, according to the International Rett Syndrome Foundation.

Infants may seem healthy during their first six to 18 months, but over time, lose coordination, speech and use of hands. These severe impairments affect nearly every aspect of life including the ability to speak, walk, eat and breathe easily, according to the International Rett Syndrome Foundation.

"Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorders," Seresa explained, "all in one little girl."

Hope has suffered from seizures, countless nights in the hospital, and endless sleepless nights.

"It's been an emotional rollercoaster," Seresa said.

Her family says the worst part of managing Hope's illness is the unknown if she will get better or worse.

"When is she going to get worse," Seresa said. "That's the worst part, the fear of losing her every day."

There's Hope for the future

The Valdez family continues to have faith for Hope and others with Rett Syndrome and continues to advocate for the illness.

" 'Hope is our Future' is our family motto," Seresa said.

The Valdez Family has advocated for Rett Syndrome to be recognized in North Carolina during October, among other legislative processes, along with publicly speaking about their experiences dealing with Rett Syndrome.

"Advocacy is one of our number one goals," Seresa said.

Seresa eventually wants to start a nonprofit to help other families recently diagnosed with Rett Syndrome.

"We get lots of information but it's very overwhelming," Seresa said.

Despite no cure being available, medications, physical and speech therapy, and nutritional support help manage symptoms and prevent complications. And there have been several wins for those dealing with Rett Syndrome.

UNC hospitals recently became best the Center of Excellence for Rett Syndrome, allowing families to come to UNC rather than travel out of state for care.

"This is very exciting for our Rett warriors," Seresa said.

Recently, the first drug ever has been submitted to the FDA caller Trofinetide for review.

While Hope can't speak or move on her own, she can communicate with her family and caretakers through a new skill she's learning with an eye gazing device that will allow her to communicate through eye movements.,

"They're very smart, we just have to teach them differently," Seresa said.

Fundraising Fun

The costs of medical bills can get extremely expensive, even with insurance— which can often be its own battle.

"We have what we call a mini hospital at our house," Seresa said.

Some of the medical equipment Hope needs, in addition to her 10+ specialists at UNC, includes: 

• Feeding tube and pump
• Suction machine
• Chest belt 
• Nebulizer
• CO2 monitor 
• Ventilator for sleeping

To help offset the constant care needed for Hope, the Valdez Family has put together fundraisers and events.

A mini-golf fundraiser will be held on Hope's behalf to bring awareness to Rett syndrome and to raise money for an expensive home modification allowing Hope to safely go downstairs.

"We do not have a downstairs full bath or bedroom," Seresa said. "As Hope continues to get heavier and heavier. we need a safer place downstairs for her."

Winners of the competition will win a medal and prize money. The fundraiser starts at 10 a.m. on October 15 at the Put Put Fun Center, located at 1340 N. Church Street, Burlington. The event still has open slots available.

Follow Hope’s journey on their Facebook page “Hope4Hope” and for any questions or more info on Hope contact the Valdez Family at seresa.valdez@gmail.com or 336-260-9359.

This article originally appeared on Times-News: 'Hope is our Future': Burlington family raises awareness for Rett Syndrome