Regina Kiiza Lived A Very Challenging But Innocent and Compassionate Life
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"Born innocent, Lived innocent and Died Innocent"
- Jacob Waiswa
Regina Kiiza was born in 1985 and died in 2017, leaving behind great compassion and beautiful life that those around her struggled to keep until limits of human nature led to their untimely end at the physical. In spirit, the beauty and compassion live on. And hopefully, we can help renurture such a life for the disadvantaged others to thrive in such a world that challenges the most vulnerable to cope and find peace.
Regina contracted meningitis, hydrocephalus, and epilepsy conditions at birth. She has since overcome these conditions to reach the age of 32. As a child life was very promising despite suffering from multiple physical and mental challenges, as support systems were readily available. A daughter of a single mother and retired civil servant, Regina was graced with a spacious home as part of the benefits of civil servants that her single parent benefited from. The location and decent house attracted extended family members –who resided there as students, newly employed youths in town and as job seekers. The public house also had tenant houses that brought in friendly people to live with. As such Regina had a vast social support system between 1985 and 2000. After retirement, her single mother lost only job and got hit hardest as bread winner. She was forced to find lowly jobs in emerging organizations to support Regina and herself as well as rent makeshift house in the town, closes to the main hospital. The strategic location ensured that Regina has access to emergency treatment. The new life was very challenging, as the social support system had soon collapsed and none of the extended family members were in sight, anymore; no even friends. Loneliness loomed the life of Regina in a very restricted and unhealthy living environment. Even her 3 siblings had long started new families and left her extremely lonely. Her single mother and caretaker spent most hours of the day toiling for a living. At age of 66, she was still running around to farm and work as support employee with local development organizations. The only chance Regina met her was after 9pm. Loneliness, immobility and lack of direct contact of sunrays, left her so vulnerable to infections and it was not so long when she contracted a life-threatening Tuberculosis (TB), which at first was mistaken for regular flu and cough. Malaria fever too joined the list of infections and conditions afflicting Regina. Regina was suddenly thrown back to early-childhood trials and tribulations of life, even worst after she contracted with a very terrifying and resistant TB virus that took her into comma and feeding as well as passing out only from tubes. But thanks to her very resilient single mother and her own experiences of living in unconscious states and facing pain and misery from greatest part of her life. Great Samaritans too came in to offer unlikely support and hope to the single mother threatened by poverty, disease and uncertainty. But Regina’s own resilience brought her back and gave her chance to life again amidst scares of TB deaths in the same hospital wards each day. Upon this victory, the future now has key lessons for Regina, her mother and the world
Regina was lucky to live again
Her care and support cannot be guaranteed.
Care and support can only come from outside family circles, from new adoptable families and friends as well as wellwishers, who may be happy to share love, hope and a better future with Regina.
Regina was transferred to Kiruddu from Jinja hospital 3 days ago (July 22). From comma, she was responding well to treatment. The 2 months and 2 drug combinations did well, until 4 days ago when she was set to adopt a 4 drug combinations. Unfortunately for Jinja medical people, the drugs they had were very strong for the liver type. When IMI inquired from main mulago, it was revealed that such cases call simply for 2 weeks break off drugs. Other colleagues suggested same, one other said only 1 of the 4 was problematic and could be withdrawn for sometime, then get reintroduced. Well, I am yet to understand what Kiruddu people have decided. We neglected this disabled girl for some years immobile and deteriorated to levels TB took a chance. It was very regretful since it was such a prevented case. Seeing the pain she is going through alongside other vulnerabilities, we too now have emotional pain to deal with.
Kiruddu is crazy place. At least 20 people die every week. Sunday 23 July was witnessed by me. On 6 floor alone, some 5 people died and left behind fears and anxieties for patients and caregivers. Reason fronted is late transfers/referrals for management after other hospitals have failed. And patients are brought in closest to death. I was among those moved by the deaths, in absence of standby medical person to resuscitate life. ~ Besides, Kiruddu location is disastrous. It is a beach environ, near Lake Victoria. The night long weather is fatal for the struggling patient, far destabilising for the care-giver.
Unfortunately Regina passed-on on July 27, around noon. It was a brave fight by her caregivers, who fell sick around her last 5 days of life from burnout and respiratory infections. It was a painful death that onlooker would experience too. The death itself was worst event as there was greater hopes of recovery before she was transferred to Kiruddu. Whatever the regrets (medical negligence, caregiver burnout, new infections and hazardous hospital environment), Regina (32) is gone, leaving behind a lot of emotional pain and love.
We hope from her loss, the struggle for better health care system, patient justice, vulnerability redress, sharing the love Regina amassed, giving hope to the bereaved families and supporting them through difficult times, and achieve a life she much longed for, will benefit the living so that they can live at peace with the dead through events as funeral and memorial services as well as family livelihood and health improvement activities in their memory.
We appreciate the timely local support from family and friends:
Jinja Medical Center/Dorothy
Jinja Referral Hospital (despite deploying student nurses, helped take Regina out of comma)
Waako Emmanuel (through sickness and death)
Jacob Waiswa (through sickness and death)
Babirye Racheal (through sickness and death)
Namulemo Daisy (Mother, from birth through death)
Matumbwe family
Mama Hellen
Stephen Kisira
Isooba Dan
David Mukunya
Isaac Waako
Waako Richard
Waako George
Kigenyi Mariatah
Uncle Bairu Fred
And the great Elizephany family
Key areas of interventions are;
-Building decent shelter for affected family.
-Providing land for gardening from which to produce food and meet their nutritional values and employ her single mother as grocery dealer and help support medical bills.
-Support to family’s immediate nutrition needs.
-Volunteering to train affected family (ies) in life skills,
-Relief grant (USD1500 per year) to help affected family (ies) run business, supported by 2-4 workers for at least three years.
Rebuilding affected family (ies) and communities with similar socioeconomic and disability challenges shall be run by the Integrated Mental health Initiative -IMI (www.integratedmhi.blogspot.ug and www.facebook.com/integratedmentalhealthinitiative ) was the focus between April and July by IMI, an organization that designs environments and human environments to reduce vulnerability, accelerate healing and achieve sustainable wellbeing. The IMI has been at the forefront of researching and giving support information to Regina mother, mobilizing local support resources from friends and using its own resources to buy recommended medicine and food for Regina, in order to sustain healing. Since longterm wellbeing of Regina was in question, the IMI now establishes a fully-fledged programme under it to extend support to bereaved families and communities faced with challenges as that suffered by Regina and her family – to overcome vulnerabilities towards otherwise fatal preventable diseases as TB, Malaria, liver and Kidney conditions.
Any material, financial, volunteer and advisory supports are highly recommended, sought and very welcome. Any such assistance will support;
Conduct funeral service for Regina Kizza
Rehabilitate her grave as part of the celebrations of her life amidst lifelong trap within nest - of physical and emotional afflictions.
Champion the life she desired: better shelter, better nutrition, freedom to move from one place to another, right to community participation and socialization, and family health and harmony – through the living as greatest connection with her.
Create awareness about the state of the health-care system and work to improve it through construction of model client-centered health facility, where life comes before money, promotion of pro-patient professionalism, promotion of alternative sources of health care, advocate for basic health care trainings and empowerment of poor communities – who cannot afford quality health care, and promotion of health care task-shifting in the health care system.
Relief aid to vulnerable families: beddings, food, medical supplies, and psychosocial support.
Business development and livelihood support grants for the socioeconomically challenged families.
How else to contribute:
- Volunteering as psychotherapist, physiotherapist, social worker, community mobilise, fundraiser, social change advocates and project administrators – for 3 – 12 months..
- Donate books.
- Support financially for as low as $50.
- Sponsor shelter building project for poor families for as low as $1500.
- Messages of support to affected families.
- Making contact:
- Express interest to volunteer by email to: dishma.imhs@gmail.com
- Donate books by DHL - Plot 15, Narambhai Road, Jinja, Uganda
- Make financial contribution by Western Union - Jacob Waiswa, Jinja or through Barclays Bank, Jinja Branch, Uganda, AC No. 6004667822