My name is Coralie and in October 2010, my son Michael woke up one morning paralyzed from the neck down. He had hit his head hard on the floor the night before, after having a tantrum, and we just thought he was overly tired, so we put him to bed unknowingly.
The following week, he underwent lifesaving surgery to take away part of his spine, and he began to walk and recovered his movement in his limbs. We later discovered that Michael and his twin brother Andrew have a rare genetic disease called MPS IV – Morquio Syndrome. Morquio syndrome is an inherited disease of metabolism in which the body is missing or doesn’t have enough of a substance needed to break down long chains of sugar molecules called glycosaminoglycans. MPS IV belongs to a group of diseases called mucopolysaccharidoses (MPS).
Morquio Syndrome affects all parts of the body, most significantly the bones. The twins have undergone fusions in the neck and have worn body casts for over 4 months. As this disease slowly robs them of the life I once dreamed for them, it also changes us into more determined people.
We hope to inspire the community to support rare disease through publicity and an online support group called Rare Diseases Perth (located in Australia) for those who struggle everyday with rare conditions and who often have no lifesaving treatments.