Since finding out about William’s condition in January 2010, he has undergone a number of operations and has a weekly treatment called Enzyme Replacement Therapy (ERT). This involves putting the missing enzyme directly into his body through a tube via a vein. William’s parents were trained to carry this out independently at home to regain some normality for their family.
Recently William has developed Hydrocephalus (water on the brain) and Carpal Tunnel Syndrome in both wrists. Both conditions require additional operations. These latest complications led to a review and it’s now believed that William is at the more severe end of the scale of his condition and the ERT treatment has not proved as effective as was hoped. Because of this his life expectancy could be shortened even further and it is now recommended that he would benefit greatly from a bone marrow transplant. This gives his body the opportunity to produce it’s own enzyme, enabling him a far better quality of life as well as increased life expectancy.
William’s family are now preparing themselves for the bone marrow transplant, which will include at least two months in hospital with regular follow-up appointments in either Great Ormond Street or Manchester Children’s hospital.
We are trying to raise funds to help his parents with travelling expenses, extra costs involved with having a child in hospital and the increased care he will need following discharge.
Considering all he has had to deal with in his early life, William is a happy, cheeky and loving little boy.
General information about MPS Disease
http://www.mpssociety.co.uk/
http://mpssociety.co.uk/uploads/Guide-MPSI.pdf
