Home / Health / Mother Breaks Silence on Rare Childhood Disease
Mother Breaks Silence on Rare Childhood Disease
15 May
Summary
- A mother speaks out after 11 months of silence following her son's death.
- She aims to raise awareness for Mucopolysaccharidosis (MPS), a rare genetic disorder.
- MPS affects the body's ability to break down sugar molecules, leading to waste buildup.
Francine Saliba has broken her silence after 11 months of grief following the death of her 11-year-old son, Joseph. Joseph passed away on June 9, 2025, due to complications from pneumonia after battling Mucopolysaccharidosis (MPS). MPS is a rare genetic disorder where the body lacks essential enzymes to break down sugar molecules, causing waste material to accumulate in cells. This progressive condition, often referred to as "childhood dementia" in its Sanfilippo Syndrome (MPS 3) form, significantly impacts a child's brain. Mary Bone of the Canadian MPS Society emphasizes that early diagnosis is crucial for managing the disease and improving a child's quality of life. While newborns in Ontario can be screened for MPS 1, other forms are harder to detect, often noticed by parents through developmental delays or specific physical features. Saliba hosted a fundraising barbecue on International MPS Awareness Day to honor Joseph and advocate for greater understanding and earlier detection of MPS, hoping to enable families to access treatments and trials at younger ages.
