As parents, we often reflect on the road to raising a child with a serious illness. We have always concluded after each discussion, that Sean was put on earth as a tool for which we can all learn from. Sean supplies his family, friends, and caretakers with unconditional love for which we will always be grateful.
Favorite Hobbies:
Sean enjoys interaction with others by being read to, listening to music (anything with a beat), boating, visiting with friends, being cuddled by his dog, strolling on those nice summer days in Alaska, and going to the movies.
Proudest Accomplishment:
We believe Sean’s proudest accomplishment is the fact that without any form of communication, Sean is able to
educate people in his community and state about his MPS illness, Sanfilippo syndrome. Sean accompanied his parents to our state capitol, Juneau, Alaska, where we testified on his behalf. It was amazing as Sean was the person that made the impact on our legislators at that visit.
MPS Heroes:
As parents, we feel that Sean would say the National MPS Society and its members are his heroes. Once we learned Sean’s diagnosis, we quickly contacted the Society to find out what this illness is all about, and we were immediately put in contact with several families and experts in this field. All of this has enabled Sean’s family and caretakers to better provide for him. Of course, we, as parents, feel that Sean is our hero as we, too, have learned so much from him.
Words of Wisdom:
Sean has taught us how to educate, motivate, communicate and advocate.
Personal Diagnosis Experience:
As a baby, Sean was what we and his doctor considered “normal” although his physical development was low on the growth charts. Around 3 years of age, Sean started having rough nights sleeping. By the age of 4, Sean was in a speech class to encourage him to talk. By the time Sean was 5, sleep was something he only needed every few days. The hyperactivity was extreme, and the only calm we saw in Sean was when he was taken ill and had a fever.
At age 6, Sean was screened for several illnesses; however, we did not receive any diagnosis. At this time, we also knew Sean was not learning at the appropriate age level and was in special education. The month Sean turned 7, there was a severe loss of several abilities: talking, understanding, personal skills (dressing, bathroom, eating). Again, Sean was screened for several illnesses, including Sanfilippo syndrome, and was seen at 3 major hospitals in the Seattle, Washington area. The MPS III test came back with a false negative, and was not repeated for another 9 years. Instead, Sean was placed on psychiatric medication to calm him down, which later was changed to analgesic medications.
We continued looking for a diagnosis. It was not until Sean was 16 that he was accurately diagnosed back home in Alaska by a new neuro-pediatric specialist which his parents had advocated for never knowing that our family would benefit from his expertise. That diagnosis changed our whole family instantly, and we then truly realized what the power of a diagnosis means.
Even though Sean is 26 now, has slowed down considerably and is medically fragile, he still has nights which he never sleeps, which continue to amaze us as parents.
