The moment when I was diagnosed with Mucopolysaccharidosis II (MPS II or Hunter Syndrome) had been extremely tough for my family and me. Life would keep going, but my life would be shorter and shorter.
We asked Beckie a few questions about her experience overcoming obstacles, and why she signed on to support the iBellieve Foundation. Her answers are truly inspirational.
I have always admired positive thinkers not only for their optimistic view on life but also because it seems like the things they achieve come naturally.
I have tried to sit down and write something about how our family is dealing with the challenges of Jack’s diagnosis and MPS II. I struggle to put it into words. It has only been 7 months since we discovered that Jack has this disease. We have done all the medical baselines to find out what toll MPS II has taken on him in the short 4 years of his life. We are now on a new journey and trying to find our way.
My brother Gregory died of Hunter Syndrome in 1993 at the age of 15 at Toronto Sick Kids Hospital. He was my little buddy and angel. I was 17 when he passed away and was left an only child.
My name is Joey Howell and MPS II runs in my family. It is carried by the women, but only affects males. My mom has 3 sisters and 1 brother. Her brother David had MPS II and died when he was 13 because of complications with a surgery. The 4 remaining sisters all had children. The oldest sister had 2 girls, the next had 2 boys (1 with MPS II, Jordan, and 1 not affected) and a girl. My mom had my sister and I. I do not have MPS II. The youngest sister also had a girl and a boy, Tyson. My cousin Tyson had MPS II and passed away in December 2007.
Sebastien was diagnosed with MPS II (Hunter Syndrome) the week of his second birthday. From that moment on, life changed. He was having a lot of issues. He needed a VP shunt soon after. He had high blood pressure, low platelet issues (which went away but recently came back with a vengeance), a very narrow trachea, pancreatitis and the list goes on!