Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis. Most of his life was spent in the ICU. The experience was traumatic. Here Sandy shares how her family celebrates his birthday and anniversary of his death – balloons, beach, beef.

Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis. Most of his life was spent in the ICU. The experience was traumatic. Sandy describes her grief during the first few years after Jack’s death.