25 Year All Stars: Meet Sophia
In 2015, PHS is excited to be celebrating 25 years of bringing patients home to receive care, where they can be with their families and grow in a comfortable environment. To celebrate the amazing journeys our patients have been on, we’re going to be highlighting their stories each month on the blog through the 25 Year All-Star series.
At nearly 9 years old, Sophia is already an inspiration to many – paving the way for students with special needs at her elementary school, and motivating students to succeed at the high school where her mother teaches.
“There’s a large number of kids right now in my classes that, by their own admission, would have thought school isn’t for them,” commented her mom. “They think they cannot succeed because English isn’t their first language, or there isn’t anybody at home making sure they do their homework. But there’s a ripple effect – Sophie’s having the ripple effect.”
Now in a place of peace and enjoyment, Sophia’s family is able to focus on being just that – a family – while also spreading their talents and hearts outside the home.
A mother’s intuition
When Sophia was born with a mass in her abdomen that was pressing on her lungs and heart, doctors expected her health problems to subside once the surgery was done to remove the mass. But Sophia’s mom knew there was more going on than initially met the eye, and she became her daughter’s biggest advocate for finding an answer.
“I didn’t want it to be true, but my heart was telling me something needed to be looked at,” she remembered. “So I went to the neurologist, and he examined her and noticed very unusual EEG patterns.”
Sophia started to have seizures at 5 months old, and was eventually having 20 or more seizures a day. After visiting the neurologist and a specialty epilepsy group, they eventually were referred to a geneticist who sent blood samples out to a number of labs acrossres the country.
A researcher from Washington responded that Sophia had the deletion they were researching, and they finally had an answer – Potocki-Shaffer syndrome, which causes organ systems to encounter multiple problems as a result of their inability to communicate. She was only the 11th known case in the world.
Adjustments for everyone’s health
For the first four years, Sophia was in and out of the hospital consistently, dealing with immune deficiencies that would lead to pneumonia. There can be a lot of variation in levels of severity with Potocki-Shaffer syndrome, and Sophia’s symptoms are more extreme as she manages bone anomalies, seizures, and cognitive challenges.
The stress took a toll on her family as her mom tried to balance caring for Sophia with being a mother to her other daughter, a wife to her husband, and remember to take care of herself.
“The first few years I just tried to do it myself,” remembered Sophia’s mom. “I didn’t know any better – I think I counted every breath the first 3 years because she was having seizures so often. I didn’t sleep, and I started becoming depressed and anxious all the time.”
When nurses noticed how exhausted she was, they approached Sophia’s mom with the idea of home care nursing.
“I thought they didn’t think I could take care of her and I felt so offended at first that I didn’t want to accept help. I thought I needed to be able to do it all by myself,” she said.
Eventually her mom accepted the offer and nurses slowly started caring for Sophia. As trust began to grow for the nurses, they were given more control over Sophia’s care. After encountering coverage issues with their previous agency, Sophia’s mom contacted PHS to inquire about receiving home care nursing and they soon came on service.
“Look at her now – she goes to school, I’m back at work, and we very much have our normal,” commented Sophia’s mom. “It’s a good place to be, and I thank PHS with all of my heart. Without their excellent care, this would have never been possible. Never. Now we can be a family, she’s stable enough with vigilant care from the nurses, and she isn’t going to the hospital all the time. I get to be mom.”
Creating a ripple effect
With Sophia’s mom confident in the nurses providing care for her daughter, she went back to work as a high school math teacher where she is able to pass along the lessons learned thanks to Sophia.
“When the PHS team takes care of Sophie, I am enabled to reach hundreds of students every day. That’s my gift, and that’s my calling – I can’t take care of patients, but I can help students who weren’t doing well in school. And somehow, I have that connection with them, they’re able to succeed in my class, and their whole outlook changes.”
Each day, Sophia’s mom has 150 teenagers going through her classroom, and she takes it upon herself to get to know them and their needs – acknowledging that somehow through Sophia and the experience with the nurses and clinical staff at PHS, she has caught onto the fact that how she cares for them transcends beyond their academic needs.
“And maybe it comes through somehow, and the kids just respond,” she added. “I think somehow, they sense there’s no judgement. I see each student as an equal, and I think the students feel that.”
Paving the way
Sophia and her family’s quality of life has increased significantly, and her mom attributes part of that to PHS. With Sophia healthy enough to go to school, she has the opportunity to impact lives every day, and has been doing just that.
“All of her classmates take such good care of her, and they’re becoming really compassionate kids,” added her mom. “And now that Sophia has paved the path, anyone who comes after her with special needs will have a tremendously easier experience.”
Sophia is surrounded by students and staff that appreciate her, and is able to be out and about in the community where she is a source of pride and joy for her friends and family.
Coming to a place of peace
“Transitioning out of a place of mourning and thinking about what could have been is an incredible blessing,” she mentioned. “She doesn’t have to do a thing for me to love her and cherish her. She simply deserves complete, real, unconditional love because she is here, and she receives that from everyone who surrounds her.”
Today, Sophia is able to fill her days with some of her favorite things including swinging, going to school, reading books with her sister and parents, and watching SpongeBob. Looking forward, Sophia’s mom hopes that this grateful and blessed stage of life as she and her family enjoy their best quality of life each day.
“She’s looked after every second of the day, and that’s only possible thanks to PHS. She’s here, we love her, and we know she loves us in return.”Originally published: July 20, 2015