AGING FOUNTAIN OF YOUTH: A Young Girl’s Bout with Progeria

Progeria patients look the same regardless of nationality

“You come to me.” Struggling to muster her words in English, she makes awkward gestures with her tiny fingers to signify she has something important to say.

Although preoccupied, Sister Marike Gielkens is compelled to put off her activity to lend an ear. “What is it?” her soft, sympathizing voice inquires. More than four years of tending to her needs has taught Sister Marike to listen to what the child feels just like everybody else and to pay close attention to her myriad moods.

With a deep gloom on her face, the young girl whispers, “You know what? I will never have a baby.”

Sister Marike, who is a 72-year old Belgian nun, never imagines such thoughts would come to a young girl. “Why?” the nun tries to delve into the issue of pregnancy in the eyes of a child.

“Because I’m too small,” she remarks with wit, but her innocence almost breaks the nun’s heart. Actually, the nun knows that the child’s real problem isn’t her height but her life span. Ana Rochelle O. Pondare is too young to be too old. She is one of 45 children in 23 countries around the globe afflicted with a rare, fatal disease known as progeria, which causes her body to age 10 times faster than normal.

Even though Rochelle’s appearance hints at a person who should be much older, she is living life as any other 9-year-old. Running, jumping, dancing, and smiling as she joins her playmates, Rochelle seems as normal as any other child.

“The first time I met Rochelle, I knew something was wrong with her,” says Sister Marike, who has encountered such case for the first time in her 40 years of charitable work for the disabled in the Philippines.

Hair loss, wrinkling of skin, and a petite stature-all signs of progeria-already are overcoming Rochelle. Sister Marike recalls, “She was 5 years old then, but she was small for her age…way too small.” Bald-headed and rawboned as she was, her eyes protruded and her “beak-like” nose became prominent.

Coming from a poor family of four, Rochelle never been to school neither to medical center for check up. While her mother ekes out a living and her father drowns in alcohol, Rochelle takes care of her siblings. “I help my mother do household chores. I wash dishes and clean the house,” she says.

Full of compassion for the odd child, Sister Marike, who is also a board member of Tahanang Walang Hagdanan, asks the parents if she could take Rochelle for medical examination. Tahanang Walang Hagdanan in Cainta, Rizal serves as a haven for people with disabilities who want to make a difference despite being different. There Rochelle could be subjected for regular check up and proper schooling.

With no apparent cure and average life expectancy of 14 years, Rochelle’s mother understands what lies ahead for her daughter. Wanting to see her live each moment to the fullest in the meantime, Rochelle’s mother concedes to Sister Marike’s earnest request.

Dealing with the Unknown
Not many people know about progeria because not many people have it. There are only two reported progeria cases in the Philippines alone. Researchers identified the extremely rare genetic condition that results from a tiny point mutation in the child’s DNA, but they do not have a grasp yet of what really causes the syndrome to find a cure.

“When Rochelle was 2-3 months old, her parents noticed that her skin was different,” Sister Marike recalls her conversation with Rochelle’s mother. Both parents pass through several medical tests to determine hereditary traits that might have contributed to her disease. They found none.

Since no treatment is available, the only medication Rochelle takes is multivitamins. “As she gets older, she experiences more problems that older people get. She’s complaining of arthritis, difficult breathing, and severe tooth ache,” Sister Marike explains.

Progeria victims have similar appearance regardless of racial and ethnic background. They survive to an average of 14 years old, with most succumbing to heart disease.

Mentally, however, Rochelle is more than normal. She’s very attentive in class and learns easily. Already in Grade I, Rochelle loves English, Maths, and Filipino. “She manifests mix levels of mentality. Sometimes she thinks as a child, sometimes as an adult.” Helen G. Casbadillo, house matron at the Tahanan says.

Savoring the Moments
Ironically, most people fear the physical drawbacks of aging-skin wrinkles, hair loss, joint stiffness-but not Rochelle. Aging came by on her as early as she could remember. She doesn’t even know how it felt to have soft skin on her face and long, shiny hair on her crown.

“You’re beautiful,” Rochelle comments while sitting on Sister Marike’s lap one time.

“Why?” Sister Marike inquires with sincerity.

“Because you’re taller than I am,” the child exclaims, devoid of any pretense.
Sister Marike and Rochelle’s family don’t want to hope for something that would only last for a moment. Life maybe cut short, but it will end beautifully for Rochelle because she affects people’s lives for the better. Her existence constantly reminds one to take advantage of the gift of life. After all, it’s not the quantity but the quality of life lived that matters most.

“What really matters is not what she has lost but what is left,” Sister Marike ends.

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