Living with Hunter syndrome has been tough for Chikara and Mishima, but thanks to home therapy with ELAPRASE, the two brothers can enjoy a normal, happy childhood.
Childhood as it should be
Ten-year-old Chikara goes to school, has dinner, and gets his homework done five days a week.
He and his six-year-old brother Mishima are extremely bright, and spend their spare time on their bikes, playing basketball, and wrestling with each other.
What’s amazing about these boys is that they can do all this despite living with Hunter syndrome, a lysosomal storage disorder which affects both their physical and cognitive capabilities.
Determined to find treatment
The boys’ father, David, fought hard over many years for a proper diagnosis – one that would explain all the medical issues that affected Chikara especially. When their diagnosis was confirmed as Hunter syndrome, David and his wife were told nothing could be done – that they should go home and prepare for their sons’ early deaths.
For David this was totally unacceptable and, after numerous phone calls and hours of research, he learned that treatment was available. In November 2006, ELAPRASE was approved for commercialisation and, by December of that year, both boys were receiving treatment at the University of Minnesota.
Despite moving to be closer to the university, the family still found the weekly round trip, for six hours of treatment, hugely taxing for the boys and their parents, and extremely disruptive for their five siblings.
Thanks to the devoted efforts of their father, David, and with the agreement of their physician, the boys are now receiving ELAPRASE by infusion at home with the help of a specialist nurse. Although treatment still takes a long time, it’s in the comfort of the boys’ own home, and also means they can maintain better attendance at school.
David is delighted with the strides his sons are making. Both boys are enjoying better health and Chikara in particular has experienced far fewer minor medical issues.
Their story inspires us to continue to pursue new, innovative treatments that give hope to patients and their families around the world.
" The boys are now receiving ELAPRASE by infusion at home with the help of a specialist nurse