The power of a mother's love

For most of the fourteen years of her life, Sheema would have to learn to be a fighter. But her mother, Sidara, has been beside her each step of the way, often quite literally.

Sheema was taken to the hospital near their community in Sri Lanka while experiencing a seizure at her first birthday party. Doctors soon discovered that she had TB meningitis, a very severe form of meningitis, often leading to death or significant disability if not treated promptly. “At first, they told me she would only survive for a week. Her skull was enlarged and her body was frail,” recalls Sidara.

Sheema was admitted to the hospital ICU where she had to be intubated. Sidara had already lost her only son at a young age, and she was determined that Sheema would survive. But the hospital bills were overwhelming for Sidara and her family to manage on her teaching salary. (Her husband, Mahil, a farmer, suffered from epilepsy and was often unable to work.) As the doctors now recommended an MRI—an expense that seemed impossible to afford—Sidara made a desperate decision. “It breaks my heart to think about it,” says Sidara, her voice tinged with pain. “My child was struggling in the ICU for four months, but I couldn’t afford the MRI. So, I went home and mortgaged our land to a private bank. We borrowed 150,000 rupees ($508) for the MRI.”

“I was told she would only survive for one week. She was like a skeleton, and her skin looked aged. We couldn’t even hold her in that condition” recalls Sidara. Though Sheema would defy the doctors’ predictions and survive, the family faced immense challenges, both physical and financial. For years, Sheema could only leave the house when carried on her mother’s back. She was paralyzed on her left side and unable to speak. “Even when she cried, we couldn’t hear it. We could only see her movements and expressions, but there was no sound,” Sidara recalls. “I was so heartbroken because after all the doctors and hospitals, they said they couldn’t heal her.” It was this severe infection in Sheema’s first year that likely led to her cerebral palsy diagnosis by the time her second came around.

The following years were filled with struggle. Sidara and Mahil fought to care for Sheema, who was mostly confined to her bed. “After my child got [cerebral palsy], we had to spend a lot to ensure she received proper nutrition,” says Sidara. “I had to spend so much on medicine, and my husband couldn’t help due to his condition.”

Occasionally, neighbors would help pay for treatment or transportation to the hospital, which helped ease the financial burden on the family. The progress was slow, but Sidara never gave up on Sheema. She began learning physical therapy techniques from a hospital clinician to help correct Sheema’s deformed limbs. She would take Sheema for walks on the nearby beach, and over time, Sheema gained strength. Eventually, Sheema could walk with her mother’s help, though her left-side paralysis meant her gait was still unsteady. “I was given training on how to stretch and reshape her limbs. With that, she was able to gain strength. Walking on the beach was very therapeutic. Eventually, she gained enough strength to walk, but due to her left-side paralysis, she still couldn’t walk properly.”

While public healthcare had provided some limited support, the treatment was inadequeate and always cost more than Sidara’s family could afford. Then, a breakthrough arrived when Sheema and Sidara were invited to attend a medical camp organized by ChildFund’s Community-Based Inclusive Development (CBID) project. “ChildFund provided a bus services for our area. We left from the village in that bus and it brought everyone who was in need of medical attention to the camp.”

There, Sheema was re-evaluated by experts. “Some disabilities were diagnosed for the first time at the camp and people got a better understanding of the issues,” Sidara remembers. “Those who had hearing impairments were given hearing aids. Even children who were not able to talk started talking after the clinics.” There, Sidara was also trained on a customized physical therapy regimen that would further help Sheema. “Many renowned doctors came to the camp” she says. “Dr. Sanjay Fernando, a neurologist, was one of the doctors who attended Sheema. He played a crucial role in her improvement. He administered a bone marrow injection. After that, [eventually] she was able to walk on her own!”

And so, at the age of 8, Sheema began to walk on her own for the first time after attending ChildFund’s medical camp. “There is nothing that makes me happier than this,” Sidara says with tears as she remembers the first steps Sheema took on her own.

Back home, Sidara began to participate in a local Disabled Persons Organization (DPO), a community group made up of people with disabilities and their family members. Sidara had always known about these groups, but she had never participated because there seemed to be no benefit. However, the capacity and mission of these groups began to be strengthened under the new CBID project and the local group soon attracted her attention. Sidara’s group of around 100 people acted as a monthly networking event where, among other activities, crucial information was being shared. Through this network, she learned about social security allowances for parents of children with disabilities. She successfully applied for assistance, giving her family some financial relief.

Under the project, ChildFund also began to organize and support smaller groups of 10 to 20 individuals carved out from the larger DPOs. These groups, known as Self-Help Groups, each began to pioneer a livelihood after receiving startup capital from ChildFund. In Sidara’s case, her Self-Help Group chose goat rearing because of its passive income generating strategy: “We don’t have to work too hard for goat rearing,” she says. “We let the goats graze at noon, and they return home by 5 p.m. We just need to ensure they’re safe. A female goat typically gives birth to two kids a year, and we get good income from it.”

The Self-Help Groups also act as village banks, providing loans and savings pools among members. “Self-Help Groups are very helpful in case of financial difficulties,” Sidara says. “No one trusts us enough to offer us loans. They always question our ability to repay while looking after disabled children. [If you need money,] the only option is to pawn jewelry. But these self-help groups are specially designed to help us and relieve our burdens.”

Thanks to the goat rearing and the government allowance, Sidara now finds it easier to make ends meet. She spends most of her time working as the elected president of her DPO making sure every family in her group is aware of the resources available to them– the social security allowance, vocational training options and special education. “I take action for their concerns like they were my own family,” says Sidara. She has also organized monthly events for children and youth with disabilities, including Sheema, giving them opportunities to socialize and make friends. The group’s advocacy has led to the installation of wheelchair ramps in local banks and government offices. Recently, they undertook a project to repair a dilapidated home for a family facing hard times.

Sidara manages all this while continuing to help Sheema build her strength. Today, as a joyful adolescent girl with a knack for music and dancing, Sheema communicates with signals and sounds that only her parents might be able to interpret. Her laughter, however, is unmistakable. Her parents recently bought her a new woofer sound system so she can dance to her favorite songs, an activity that keeps her engaged for hours on end. “She knows how to use sound system and put on music,” says Sidara. “This helps her to stay physically active.”

The daily physical therapy Sidara performs continues to pay back dividends for Sheema, but a misshaped airway means she has to tilt food and drink down into her mouth using a special pointed cup. “She still has a contorted hand,” says Mom. “But I believe she will improve even more. I would be very happy if both her hand and her airway could be fully corrected. Overall, she's about 90% there.”

Supported by three rounds of funding by the German government and another two rounds by the LIPOID Foundation, ChildFund Sri Lanka’s Community Based Inclusive Development project is currently being expanded by sponsorship funds to other areas not originally reached by the scope of awards. So far, it’s helped more than 4,000 children with disabilities to experience healing, step out of the shadows and participate in community life. It’s also helped parents of children with disabilities to earn a livelihood and understand their rights. It is the holistic nature of this project that today means Sheema’s family have the prospect of a brighter future with each passing day.

“Earlier, she needed my assistance to do her daily tasks, but now she can manage them without my help,” continues Mom. “She has started climbing stairs now. She uses the toilet on her own and also bathes without anyone’s help. She has started eating by herself. Doctors and everyone said she wouldn't survive, but with God's grace, she has done all of this,” beams Sidara.

Sidara worries about who will care for Sheema when she can no longer do so herself. Thus, she continues to work to increase her level of independence day by day just as she works to build a more inclusive and empowered community for people with disabilities. “It’s my hope and wish that other children with similar challenges can reach the same level that Sheema has.”