Heba
Heba is a 14-year-old girl living in Jerash “Gaza” Refugee Camp. She also lives with Congenital Insensitivity to Pain (CIP). This rare, inherited disease inhibits the body’s ability to feel physical pain. Despite her family’s efforts to provide her with constant care and support, they have limited educational and financial resources as classified “ex-Gazan” Palestinian refugees in Jordan. Their socio-economic situation has left them unable to afford the proper care for Heba, and thus without the necessary support of healthcare providers to educate them on managing her illness effectively. Since birth, Heba has suffered a series of injuries and extreme procedures, including partial loss of her tongue, the amputation of one leg below the knee, the loss of a toe, and several broken bones.
Heba remains hopeful, in spite of her disease and disability. She loves school and wants to continue her studies, even though she is unable to attend classes now due to her injuries. She is a fan of chocolate and enjoys painting her nails with her sister.
Heba’s story is one of many in Jerash “Gaza” Refugee Camp that show how the combined lack of access to health care and education can hold behind an entire generation of youth.
Heba poses for a portrait in her home as her siblings move through the frame. Heba has Congenital Insensitivity to Pain (CIP), a rare genetic disorder that prevents her from feeling physical pain. February 7, 2019. Photo by: Safiah Abu Shanin
Heba and her sister, Heyam, roll through the streets of Jerash "Gaza" Refugee Camp. Heyam often jumps on the back of her sister's motorized chair for a ride around the camp. March 15, 2019. Photo by: Safiah Abu Shanin
Heba paints Heyam's nails. Heba enjoys painting her own nails as well, but finds it difficult to use the paintbrush on herself due to her casted arm. Heba broke her arm in several places, but did not feel it. March 1, 2019. Photo by: Safiah Abu Shanin
Heba and her Mother on a rare visit to the capital city, Amman, for a series of doctors' appointments with infectious disease specialists. Prior to these visits, Heba had not been formally diagnosed with CIP, and her family had limited knowledge on how to care for her condition. The genetic disease Is commonly misidentified as Leprosy, a bacterial infection which manifests itself similarly in the form of severe injuries to the hands and feet. March 17, 2019. Photo by: Safiah Abu Shanin
(L-R) Heba, her Aunt, her brother and her sister sit in a room of their house in Jerash "Gaza" Refugee Camp while the photographer visits the family. Heba's Aunt is one of her primary caregivers, along with her Mother. March 15, 2019. Photo by: Safiah Abu Shanin
Heba's mother and sister, Heyam, help her leave the house in her wheelchair while her brother and sister watch on. The motorized wheelchair is very heavy and requires the help of several people to maneuver Heba out of the house and down the stairs. Heba's home, like many homes of people with disabilities in the camp, is not accessible for her to enter in and out of freely. March 15, 2019. Photo by: Safiah Abu Shanin
Following Heba's doctors' appointments, we went to City Mall as a treat for Heba. Heba likes things that most teenage girls enjoy: make-up, doing her nails and shopping. However, going out in public is much more complicated for Heba physically and emotionally than it is for an average 14-year-old girl. March 17, 2019. Photo by: Safiah Abu Shanin
Heba waits near a local shop ("dukan") in the camp while her sister, Heyam, plays with the other children and purchases sweets. Stairs at the entrance prevent Heba from entering the shop with her wheelchair. March 1, 2019. Photo by: Safiah Abu Shanin
Heba and her siblings pose for a family portrait in the entranceway of their home in Jerash "Gaza" Refugee camp. March 15, 2019. Photo by: Safiah Abu Shanin
Heba sits alone in her family's majilis in their home in Jerash "Gaza" Refugee Camp. Her mother and family does their best to support and care for Heba, but the reality is that her disease and disability have marginalized her from many activities. Heba has not been able to attend school lately due to the inaccessibility of the school in the camp, as well as her mounting injuries that require constant attention. March 15, 2019. Photo by: Safiah Abu Shanin