Families' struggle, quest for hope for children living with disability

At the home of Mama Muturi with Sister Winfred Nganya andTwenty-one-year old Elloise Muturi is among the five siblings living DISABILITY under the care of their mothers. [Jayne Rose Gacheri, Standard] Mercy Mukoiti, 47 years old, has six children - four boys and two girls aged between 30 years and 9 years old. She is widowed. Her firstborn, Duncan Mugambi was born to her at the age of 17 years. She had delivery issues and delivered Mugambi through a vacuum. This probably affected him and led to his disability. Thirty years later, her son still has problems with chewing. She has to chew food for him or feed him liquids. It has not been easy taking care of Mugambi, who is either in a wheelchair or bedridden. "If I have to leave, I have to tie him on the bed or on the wheelchair to avoid him falling off," she says, adding that he has done so, thereby hurting him many times. But at the Isiolo-based Jesus Mary and Joseph Rehabilitation Centre daycare, Mukoiti says it is not easy taking care of her son. While staying at home, she says, Mugambi had improved tremendously; moving his limbs and lower body and could engage in activities with other children, thanks to the therapy classes. Started by Nazareth Sisters of Annunciation in 1994 the centre caters for children, and youth with physical, and mental conditions and syndromes According to a 2018 Report by the Kenya National Nutrition Action Plan (KNAP), optimal maternal nutrition is crucial for the health and development of both the fetus and the mother It has further been shown to have an impact on birth outcomes, with better-nourished mothers having increased chances of delivering healthier infants Research has confirmed that breastfeeding improves the health, development, and survival of infants, children, and mothers, with the Lancet Series 2016 showing that improving breastfeeding practices could save 823,000 deaths and that the infants would be healthy Investing in the early years, the first 1,000 days of life - between a woman's pregnancy and her child's second birthday - is critical for child survival, growth, and development. It is the period when the physiological needs of both the mother and child are at their highest and the child is highly dependent on the mother for nutrition and other requirements. This is what Jesus Mary and Joseph Rehabilitation Centre strives to do "We started with 30 children and evolved into a symbol of hope for the children and youth with disabilities, who are usually stigmatised by society. We provide and promote reasons to give these particular relevance, hope, and potential value to their communities through technical skills training in handcraft, tailoring, and dressmaking," says Sister Winfred Nkanya Until 2013, the institution operated as a children's home. However, a tragic incident involving raiders left the caretaker dead leaving the children traumatized. This led to the immediate closure of the home. The children were reintegrated with their families. The programme now runs as a home-based daycare centre. "This has made life for the children because their parents are very poor and are not able to provide them basic needs, and therefore depend heavily on the Centre for shelter, food, clothes, and money for medical bills and in this way, they continue to regress without any rehabilitation intervention. According to Kadebene chief, Bernard Mwiti, there are more than 200 PWDs in the location. "Most of the households are extremely poor and depend on donations from well-wishers such as JMJ, and individual donors, but we are doing everything possible to address the issue," he explains. The measures include creating awareness of the need for nutritional care for mothers and the need to attend prenatal clinics. He associates the high number of people with disabilities with poor nutrition and lack of medical attention. Sr Nkanya and her team including board members usually conduct home visits to check on those families that have challenges accessing the centre. At one home, a grandmother is taking care of Eloise Mutie 22 and his a mentally challenged uncle. Mutie is in a wheelchair outside a two-roomed semi-structured house, a donation by the Isiolo Level 5 Hospital out of sympathy as fellow tenants kicked her out due to her four PWD children. Their mother is at the level 5 hospital where she works as a casual. She narrates albeit emotionally her "I have been to hell and back" kind of story that includes being kicked out by fellow tenants because of her four PWD children. Her present home is a donation from Isiolo Hospital. "I have interacted with some of the worst neighbours, and tenants who have labelled me a witch and referred to my children as devils," the mother of six sorrowfully, adding that sometimes she has had to give her food and other donations in pursuance of peace in vain. The children are aged between 7 and 22 years. She lost her daughter, also a PWD to a fire accident. She says she lives with perpetual guilt of having left her unattended on that fateful day because she had to go out and look for food. At age 17, she gave birth to her firstborn. Shortly after, she discovered that Mutie had challenges moving his limbs. "The situation worsened with each passing year, and soon his father who did not appreciate his son's condition left to marry someone else," laments the agonising mother. Eight years down the line, she remarried, got pregnant, and sadly, the same thing happened. His secondborn, a girl was a PWD. Then came the third, the fourth, the fifth, and the sixth, out of which two were PWDs. Life, she says, became a living hell with the husband battering her to a pulp. Many times, she has wondered why fate would put her on such a sinking ship and almost believes that she is bewitched. Now, the family makes ends meet through donations and the "Mother Teresa of Isiolo" as Sister Nkanya is affectionately called. Next, we visit Zipporah Nchekei's home, who we find is out looking for firewood. We find Ntinyari, alone lying on a couch. She cannot move and is deaf and dumb. Nchekei is her grandmother. Theirs is a sad tale. Ntinyari was born 22 years ago, with a disability that has condemned her to bed since birth. Her mother disappeared soon after realising that her daughter would be confined for the rest of her life When Nchekei arrives with a few pieces of wood, I notice how frail she is. She looks so distraught that I wonder how she manages this situation of her granddaughter, never giving up on her. The grandmother has six other children under her care. The environment under which they live speaks of extreme poverty. Ntinyari cannot express herself nor can she eat. Her food can only be solid. Her grandmother literary chews the food for her before feeding her. "I have to chew the food and then feed her," says the devoted grandmother. However, this is not all to this sad story. Ntinyari was raped and became pregnant at 20. It was not until her 7th semester that her grandmother noticed. "Taking her to hospital, 40 kilometres away was a nightmare, and I had to stay with her at the hospital for over a month," says Nchekei. Miraculously, Ntinyari delivered a bouncing baby girl who was taken to Ripples Home, Meru. The institution cared for the baby for three years (according to the contract) before bringing her back. Now, this baby girl lives with her mother and her great-grandmother under deplorable conditions. Sister Nkanya weeps for this family among many others, wishing she could be able to do more. Our next visit is to David Thuranira (23) and Samuel Muriuki (25), who lives in Athwana Ward, Tigania East, with their mother Regina Mwarochia. Thuranira and Muriuki are mentally challenged. Their mother has a hard time caring for them as their greatest hobby is doing a "disappearing" act, causing their mother untold agony and turmoil. This hardship and extreme poverty manifest themselves physically. Though Mwarochia is 50 years, she appears like an 80-year-old octogenarian. Her story is of pained suffering and extreme poverty. We found Thuranira and Muriuki trying to make a meal from a pig's intestines on our visit. They had collected them from a dump site. They were using cow dung as a source of fuel. They were all happy when we gave them "goodies". "Their father disappeared when they were aged five and seven because he could not keep up with their appearance and disability," says Mwarochia, adding that when they disappear, sometimes for days, they will live anywhere and eat anything. Relatives, neighbours, and the Athwana community have not been kind to the family. The boys have been bullied, with most people thinking they are apes, "but no, they are my precious sons," says the dissolute mother. We fall into deep silence as we leave the homestead. Sister Nkanya brings us back to reality. She wishes she could get enough funding to build a rehabilitation Centre, "just like that of her mentor priest of Rongai Children's Home. All the other homes that we visited had tales of untold suffering. Our visits took us to Loiroba in Uringu division, Tigania West. Sisters appealing to raise Sh4.2 million to upgrade the institution to a fully pledged daycare centre.

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