Defying the odds, a Whittier student graduates from high school
Dressed in a blue Rembrandt cap and a dress covering her white sleeveless gown, 18-year-old Hannah Lopez waited in silence for her graduation ceremony to begin.
It was supposed to be a drive-in celebration, with well-wishers waving as they passed, but guests stopped and gathered in the front yard to pay their respects to the lone graduate.
Penny Lopez, 39, Hannah’s mother, had decorated the yard with blue, yellow and white helium balloons. The family put up congratulatory signs and a white and gold fabric backdrop.
Before the guests arrived, two pediatric palliative care nurses had kindly helped Penny lift her daughter and dress her in the academic badges laid out on the bed. Attentive to detail, nurse Anja Thomas brushed several long eyelashes that had fallen on Hannah’s checks.
Then they moved Hannah from the bed to the wheelchair.
Penny pushed the wheelchair across the lawn and past the backdrop as Thomas followed, pulling a portable oxygen tank. Penny placed the mortarboard with a blue and yellow tassel on her daughter’s inky black hair.
“There’s so many things I won’t see Hannah do,” Penny said. “I will never see her graduate from college, get married or start a family.
“When she was diagnosed, we were told that we would probably never see her finish high school. So for her to take this step is such an accomplishment because the odds were stacked against her and she persevered.
Hannah has mucopolysaccharidosis type III. Also known as Sanfilippo syndrome, it is a rare genetic condition.
“We’ve learned that it’s okay to ask someone for help.”
— Penny Lopez, Hannah’s mother
Penny explains that Hannah is missing an enzyme needed to break down natural sugars in her body. Without this enzyme, his body breaks down.
“It’s been described neurologically as Alzheimer’s disease for children,” Penny said. Only 1 in 70,000 children are born with this hereditary disease. The average lifespan for people with Sanfilippo syndrome is between 10 and 13 years.
Hannah survived all odds.
She was diagnosed at the age of 5 after losing milestones and has been slowly declining since then. She lost her ability to walk in 2017. Now she uses a wheelchair and is unable to speak.
She has been a pediatric palliative care patient with Providence TrinityKids Care since October 2019.
“We’ve learned that it’s okay to ask someone for help,” Penny said. “It’s been a relief for us because we have that support.”
“It’s one of those things that nobody wants to talk about, but you have to,” she continued. “You have to have some type of plan. When Aiden passed away, it was not planned. It’s so hard to make these decisions in mourning. We want to have a plan for Hannah so we can grieve when the time comes.
Hannah’s younger brother, Aiden, was diagnosed with the same condition. He died in his mother’s arms in 2011, just three months before his third birthday.
Penny and her husband, Gilbert Lopez, 42, are both Army veterans. They met at Ft. Knox in Kentucky. With Hannah, their other children are Lucas, 17; Joaquin, 10 years old; Lawrence, 5 years old; and Palome, 3.
The COVID-19 pandemic has changed almost everything for the family, but Gilbert and Penny are doing what soldiers do. They walk.
Many people have become angry and destabilized during the pandemic. Not Gilbert. When asked if he was upset that some people refused to wear masks to protect vulnerable people, he said no.
He didn’t have time to get angry, Gilbert said. He only had time for love.
“Regardless of the fact that we are having difficulties, we are a normal family,” he said. Every family will face difficult times. “We take it every day at a time,” he said. “We try to stay positive.”
What, Hannah’s parents asked, are the most precious moments with your daughter?
For Penny, it’s crawling into bed with Hannah on Friday nights and watching “Gilmore Girls.”
For Gilbert, it’s about tucking in Hannah at night.
He gives her medicine every night through a stomach tube and checks the temperature in the room to make sure it’s not too hot. His body cannot regulate its temperature. He then leans over and kisses her on the cheek. It’s their time together.
Lucas, Hannah’s younger brother of a year, is also involved in Hannah’s care.
“I feel like a big brother and a nurse in a way,” he said. “It’s a really interesting experience. So many new skills.
He added, “It’s really nice to look up to her for inspiration and to see her perseverance. I learned a lot from her.”
Another of her caregivers is Thomas, who has been a registered nurse for over 30 years. She spent most of that time working in hospitals with seriously ill children. For the past five years, she has moved to pediatric hospice.
The words pediatrics and hospice shouldn’t be in the same sentence, but Thomas talks about the privilege of being with families, including Hannah’s, during such difficult times.
She has the opportunity, says Thomas, to witness love.
“It makes this job the most rewarding thing I’ve ever done,” she said. “Meeting families like Hannah’s is truly amazing.”
Before the pandemic, Hannah attended a special day class every day at California High School in Whittier.
Eventually, her classes were held virtually and Lucas sat next to her as he took part in his own virtual classes.
When it was determined it was safe to do so, Hannah was able to attend classes in person, once a week, with her teacher Sylvia Meza and a nurse, Deborah Retama.
She was the only student in the class.
At the graduation ceremony at the Lopez’s home, Shana Jones, vice principal of California High, greeted the guests and offered some brief remarks.
“What a remarkable journey Hannah has had,” Jones said.
She presented Hannah with her graduation certificate and placed it in her lap. Meza then moved the pom pom from one side of Hannah’s mortarboard to the other.
The home ceremony took place in mid-May. Hannah wasn’t well, so the Lopez family decided to get together early to celebrate.
But on Wednesday, 600 graduating seniors and their families gathered on the California High football field to get started. Among the names read: Hannah Lopez. She and her family were there to hear it.