Imagine going through life at 4 feet, 4 inches tall. Or shorter.
What if you couldn’t reach elevator buttons or see above a grocery store counter? How would you use public bathrooms or step onto a bus? What if you needed a step stool to reach everything in the kitchen, or to turn on the faucet to brush your teeth?
This is everyday life for people born with achondroplasia, a birth defect that affects bone growth, especially in the arms and legs. Achondroplasia, the most common cause of dwarfism, limits mobility in the legs and arms, making the most mundane activities difficult, from brushing hair and putting on pants to wiping after using the toilet.
For years, people with achondroplasia have learned to negotiate life with varying degrees of success. But now, thanks to a painful procedure, they have a chance to become taller in the hopes of improving their quality of life.
Lourdes Segade’s photo series “Long Way Up” follows five families as their children journey through the process known as limb lengthening. Limb lengthening can last anywhere from three to five years, involving multiple surgeries and long recovery periods.
“I was amazed with what people were willing to endure for something I cannot, in fact, imagine myself without - centimeters,” said Segade, who is based in Barcelona, Spain. “Maybe it is just centimeters for those of us who don’t need a stool to get a glass of water at our own home. For them, it means a better quality of life and less discrimination.
“I wanted to tell their stories, stories of people overcoming the physical and emotional handicaps that come with living with a disease like achondroplasia.”
In her photos, Segade captures intimate moments of joy and pain, from the operating room to the child's home and school.
Sergi was 9 years old when Segade met him in September 2011 in Barcelona. He was about to start his first limb-lengthening procedure – adding 12.2 centimeters to his shinbones.
Dr. Ignacio Ginebreda and his team broke the bones in Sergi’s legs and put in monolateral external fixators to correct the curvature in his shinbones. The fixator has a scale with millimeters that’s held in place by casts.
Segade followed Sergi through surgery to his home in Banyoles, Spain. Each day, Sergi or his mother, Eva, turned the key 1 millimeter toward the prescribed length. At first, his mother cured the wounds and turned the key until Sergi mustered the courage to do it himself under her supervision. As they added millimeters to the scale in the fixator, Sergi’s bones stretched while healing.
Segade’s camera followed him to school, where he got around in a wheelchair. After 10 months in the wheelchair, doctors removed the fixators and cast and Sergi began physical therapy to regain muscles in his legs before another surgery.
Ginebreda’s team was scheduled to start working on Sergi's thighbones in August 2014 until they found out he had fallen short of his shinbones goal. So Sergi will return in August to finish the shinbone lengthening.
The family was disappointed, but they trust Ginebreda, one of the world’s leading experts in limb lengthening. Besides, this time, it won’t take as long, Segade said.
Seemingly ordinary people dealing with extraordinary circumstances are common themes in Segade’s work, which includes a photo series of mothers caring for adult children with AIDS. The goal is to show the universality of human emotions, she said.
“I am very interested in humanity as a quality, and emotions are the same for every single human being,” she said. “That’s something that connects us to others. Mothers are mothers and children are children and they do not stop being so because they have a condition. They try to lead a ‘normal’ life like we do.”
- Emanuella Grinberg, CNN