Ghanaian father John Dzido recounts the challenges he’s faced since his son Caleb—diagnosed with severe HbSS sickle cell disease at 18 months—suffered a stroke at age three. Now 17, Caleb is bedridden and battling ongoing complications, requiring constant care.
1. Intensive Medical Care for Years
Over the past 14 years, Caleb has endured multiple strokes, seizures, surgeries, chronic blood transfusions, management of iron overload, recurrent infections, and the most recent scoliosis diagnosis. John remains Caleb’s full-time caregiver, overseeing his medication, feeding, bathing, and transfer with great care due to a hip implant.
2. Personal & Emotional Toll
John explains that Caleb’s condition severely impairs speech, mobility, and cognition—leaving him dependent on others for all daily tasks. He has sacrificed jobs—last working at the Sickle Cell Foundation—due to unpredictable hospital visits and caregiving demands.
3. Financial Struggles & Treatment Expenses
Medication, blood plate implants (~ GH₵23,000), and physiotherapy injectables (~ GH₵30,000–44,000) place heavy financial demands. John engages in online trading and reselling goods on credit, while his wife supplements income by selling ice cream. They’re now appealing for public support to meet rent and medical bills.
4. Genetic Awareness & Advocacy
Having discovered their genotypes only after Caleb’s diagnosis—and finding that Caleb’s mother unknowingly lived with sickle cell—John now advocates for genotype testing before marriage or childbearing. He urges young couples to avoid the preventable burden of SCD on families and to make informed, genetic choices.
5. A Father’s Resolve
Despite adversity, John’s love for Caleb remains steadfast. He promises to support his son until he becomes functionally independent and encourages societal support to ease their journey. The pair’s bond endures through struggle, love, and hope.
Why It Matters
- Caretaker Resilience: Highlights constant emotional, financial, and physical stress in caring for a chronically ill child.
- Ghana’s SCD Burden: Emphasises the importance of genetic screening, medical access, and awareness.
- Historical Advocacy: Personal stories like Dzido’s help destigmatize SCD and mobilise policy and community support.
What’s Next
- Support Appeal: John is seeking help with medical expenses, rent, and physiotherapy supplies.
- Awareness Drives: Advocates are calling for pre-marriage genotype testing and public education programs.
- Policy Change: Greater government involvement is needed to improve access to screenings, treatments, and caregiver support systems.
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