Isaiah is the youngest of four siblings.
Even since his diagnosis with sickle cell anaemia shortly after birth, Isaiah has been has been hospitalized more than 20 times. He is blessed with a loving family, especially his mom who stays glued to her son no matter the days spent in hospital.
The winter months affect Isaiah the most.
Isaiah’s family has dived into SCD activism. The family has hosted several Annual Sickle Cell Blood drives; his youth group at church took up a collection and donated toys to the Sickle Cell Department of St. Christopher’s Hospital.
Isaiah attends a school with predominantly White children. Through the efforts of Isaiah and his mom, staff members at the school were sensitized about SCD and what to expect from a child who battles the disease.
Isaiah is very knowledgeable about his condition and will speak of how it makes him feel when he goes through his crisis.
Whenever he asks that troubling age-old question human beings have often asked (‘WHY ME ?), his mom tells him, ‘Because – because you are SPECIAL.’ The answer may not be fully satisfying – even to the one who gives the answer -, but it often represses the angst for both.
Whenever he asks that troubling age-old question human beings have often asked (‘WHY ME ?’), his mom tells him, ‘Because – because you are SPECIAL.’
‘I tell him, you are going through this so that you can be stronger and able to help others with the condition,’ Mrs Kuh says.
The brave little man has written a book, ‘Captain I Visits The Hospital ‘ It is about a boy visiting sick children in the hospital – and making an adventure of it.
Isaiah’s book is available on Amazon: https://www.amazon.com/dp/1640502432/