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Parents striving to give daughter with Rett syndrome the best life possible

There’s something essential to childhood that Daphne Calvert will never fully experience.

In November 2017, Daphne’s hand use started to regress. Three months later, in February 2018, she was diagnosed with Rett syndrome, a rare neurological disorder that almost exclusively appears in girls and causes severe impairments, according to rettsyndrome.org.

Rett is caused by mutations on the X chromosome on the MECP2 gene. It occurs in 1 out of every 10,000 female births and more rarely in male births. There is currently no cure for Rett Sydrome, but there are treatments to help mitigate symptoms.

It is not a degenerative disorder, and people with Rett live to middle age or older.

Daphne has severe impairments to her mobility and communication, and they could get worse with time. She also has difficulty eating, and her parents, Leigh Calvert, 33, and Lacey Calvert, 32, are getting her a feeding tube soon. But one childhood thing Daphne doesn’t fully experience, after recently starting at Noah’s Ark Preschool in Vancouver, is the ability to fully play with other kids.

“She’s a typical 3-year-old in her mind. She’s learning her colors, numbers and the alphabet,” her mother said. “The only thing is physically she’s not able to play. She has no use of her hands. She can’t play with stuff. We have to facilitate all play. It’s sad, because all the other kids are running around and playing and holding their blocks, interacting with other kids, and she can’t do that as much as she, in her mind, wants to.”

What has been stripped from Daphne for now, and possibly her life, was the toughest thing for Leigh Calvert and Lacey Calvert to face after her diagnosis. Lacey Calvert said the diagnosis was heartbreaking, but relieving in that they discovered an answer to Daphne’s symptoms.

“My heart was crushed into a million pieces on the floor, but at the same time, I think we both felt a lot of relief because we had many months from November to February where we were pretty sure she had Rett, but we were waiting for a blood test to come back,” Lacey Calvert said. “We almost hoped it was Rett because we would have an answer, and the relief of having an answer and being able to identify what it is and join the community of parents who have Rett syndrome, that was really important to us. We felt a huge sense of relief.”

Daphne does physical therapy. They are also considering getting an eye-gaze machine to help her communicate.

Leigh Calvert said the family — which includes Sadie, 6, and Dean, 8 months — is focusing on creating the most joyous and comfortable life for Daphne. She loves movies, swings and anything to do with water — bath time and swim time. Daphne is also a fan of experiencing new places in her stroller. She traveled to England earlier this year, where her father is from.

Daphne will be in her stroller Sept. 22 at the Rose Quarter in Portland at a strollathon her parents chaired to raise money for Rett. Leigh Calvert and Lacey Calvert have found the Rett community locally and online to be a major help while they navigate raising a daughter with Rett.

Molly Paris, a Jacksonville, Fla. resident, was diagnosed with Rett at age 3, and became her high school valedictorian this year. She uses a text-to-speech app to communicate, and is attending Florida State College at Jacksonville with a goal to study engineering at the University of Central Florida, according to the Jacksonville CBS affiliate.

Stories like that give Leigh Calvert hope that his daughter can still experience connection and learning through communication.

“I don’t use her as a benchmark,” he said of Paris. “I use her as a mental example of what Daphne could be capable of. You don’t really know what her capability is. I’d like to think that if she can get to a point where she can communicate, then she can do anything. That’s all I can hope for.”


Source: https://www.columbian.com

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