Dressed in a Rembrandt blue cap and gown covering her white, sleeveless dress, Hannah Lopez, 18, waited silently for her graduation ceremony to begin.
It was meant to be a drive-by celebration, with well-wishers waving as they passed by, but the guests stopped and assembled in the front yard to pay tribute 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 cloth backdrop.
Before the guests arrived, two pediatric hospice nurses had gently helped Penny lift her daughter and dress her in the academic regalia laid out on the bed. Attentive to detail, nurse Anja Thomas brushed off several long eyelashes that had fallen on Hannah’s checks.
Next, they transitioned Hannah from the bed to the wheelchair.
Penny pushed the wheelchair out to the lawn and in front of the backdrop as Thomas followed, pulling a portable oxygen tank. Penny placed the mortarboard with a blue and yellow tassel on top of her daughter’s ink-black hair.
“There are so many things that I won’t get to 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 we most likely would never see her graduate from high school. So, for her to meet this milestone, is such an accomplishment because the odds have been stacked against her and she has persevered.”
Hannah has Mucopolysaccharidosis type III. Also known as Sanfilippo syndrome, it’s a rare genetic condition.
“We have learned it’s OK to ask someone for help.”
— Penny Lopez, Hannah’s mother
Penny explains that Hannah is missing an enzyme needed to break down naturally occurring sugars in her body. Without that enzyme, her body is breaking down.
“It has been described neurologically as Alzheimer’s for kids,” Penny said. Only 1 in 70,000 children are born with this inherited condition. The average life span of people with Sanfilippo syndrome is between 10 and 13 years old.
Hannah has outlived the odds.
She was diagnosed at age 5 after losing milestones and has slowly declined 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 hospice patient with Providence TrinityKids Care since October 2019.
“We have learned it’s OK 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 nobody wants to talk about, but you must,” she continued. “You must have some type of plan. When Aiden passed away it wasn’t expected. It’s so hard to make those decisions in grief. We want to have a plan for Hannah so we can mourn when it’s time.”
Hannah’s younger brother Aiden was diagnosed with the same condition. He died in his mother’s arms in 2011, just three months shy of his third birthday.
Penny and her husband, Gilbert Lopez, 42, are both Army veterans. They met at Ft. Knox in Kentucky. Along with Hannah, their other children are Lucas, 17; Joaquin, 10; Lorenzo, 5; and Paloma, 3.
The COVID-19 pandemic upended almost everything for the family, but Gilbert and Penny do what soldiers do. They march on.
Many people became angry and unsettled during the pandemic. Not Gilbert. Asked if he was upset that some people refused to wear masks to protect the vulnerable, he said no.
He didn’t have time for anger, Gilbert said. He only had time for love.
“Regardless of the fact that we are experiencing some challenges, we are a normal family,” he said. Every family will face hard times. “We just take it every day at a time,” he said. “We try and stay positive.”
What, Hannah’s parents were asked, are the most cherished times with your daughter?
For Penny, it’s crawling into bed with Hannah on Friday nights and watching “Gilmore Girls.”
For Gilbert, it’s tucking Hannah in at night.
He gives her nightly medicine through a stomach tube and checks the temperature of the room to make sure it’s not too warm. Her body can’t regulate her temperature. He then leans down and kisses her on the cheek. It’s their time together.
Lucas, Hannah’s younger brother by one year, also is involved with Hannah’s care.
“It feels like I am both a big brother and like 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 have learned a lot from her.”
Another of her caregivers is Thomas, who has been a registered nurse for over 30 years. She has spent most of that time working in hospitals with acutely ill children. Over the last five years, she has transitioned to pediatric hospice.
The words pediatric and hospice shouldn’t be in the same sentence, but Thomas speaks about the privilege of being with families, including Hannah’s, during times that are so difficult.
She has the opportunity, Thomas said, to witness love.
“It makes this job the most rewarding thing I have ever done,” she said. “To meet families like Hannah’s, it’s truly amazing.”
Before the pandemic, Hannah attended a special day class daily at California High School in Whittier.
Eventually, her classes were held virtually, and Lucas sat next to her as he participated in his own virtual classes.
When it was determined it was safe to do so, Hannah was able to attend class in person, once a week, with her teacher Sylvia Meza and a nurse, Deborah Retama.
She was the only student in the classroom.
During the graduation ceremony at the Lopez home, Shana Jones, an assistant principal at California High, welcomed the guests and made a few 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 tassel from one side of Hannah’s mortarboard to the other.
The home ceremony was held in mid-May. Hannah had not been doing well, so the Lopez family decided to gather early to celebrate.
But on Wednesday, 600 graduating seniors and their families gathered at California High’s football field for commencement. Among the names read out: Hannah Lopez. She and her family were there to hear it.
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