Ties

Ties is 14 years old and has MPS II (Hunter)

Ties is a very sociable and loveable boy. Since almost five years he is treated with enzyme replacement therapy. Since three years he receives his weekly infusions at home, administered by his mother with the help of professional nurses. The therapy has improved his quality of live enormously. “He is still enjoying life very much, and we enjoy him very much” his mother says.

Ties was diagnosed at 4,5 years, after having a lot of ENT-trouble, like earinfections, from the age of three. He also had a developmental delay and was though to be autistic, before a doctor noted that he could have a form of MPS, because of his facial features.

“After the diagnosis it was very difficult to find a school or day-care centre that would take him. Because of this he stayed home for half a year” his mother remembers. Throughout the years Ties’ family had to be very persistent and patient towards authorities and care-takers. Constantly standing up for his needs and pushing towards getting the help he needs to live at home with his family, as normal as possible. Among others, VKS assisted the family in getting Ties what he needs.

“We think he thrives because of this” his mother says. “Though the disease progresses, we are well aware of that. He recently got a nasogastric tube, because of his swallowing problems. On the other hand, a few years back it would have been unthinkable that he could be still alive at the age of 14. When he was younger he used to be angry and upset sometimes. But the last couple of years he is always happy and cheerful. He is such a sweet boy”

Clara
Sophie
Theophile
Kobe
Joanna
Ties
Jeff
Ayşe Nihan Uğuz
Rebeca
David
Maria