1.  As an infant I was a frequent flyer at the Toronto Hospital for Sick Children, to be treated for numerous ailments i.e. hernia repairs, ear infections, bladder surgery, gastric reflux(throwing up after every meal).  At the age of 18 months on a routine chest x-ray the radiologist reported a spinal deformity. This led to more x-rays and a referral to a genetic metabolic specialist.  At age 2 I was finally diagnosed with MPS VI.

2.  I am being followed annually by:  Genetic Metabolic Specialist  Orthopedic Surgeon  Ophthalmologist  Every 6 months and as necessary:  ENT (Ear Nose and Throat) Surgeon  ENT Doctor  Dr. Joe Clarke (Genetic Metabolic Specialist) Is my overseer in Toronto

3.  Up to 2001(age 20), I have had 3 hernia repairs, several tubes in my eardrums, tonsils and adenoid surgery and bladder surgery.  Since 2002 I have had:  Decompression of the spine/neck  Heart surgery for a apical aneurysm  Double total hip replacements  Because of difficult intubation with these major surgeries, I now have a permanent tracheotomy.

4.  Vision impairment due to corneal clouding and farsightedness.  Frequent ear infections, with some hearing loss.  Joint stiffness  Shortness of breath with moderate activity (i.e. climbing stairs, running and brisk walking)  Migraines  If my symptoms get worse, I visit my Dr’s.  I am not taking Naglazyme and I haven’t had a BMT. We did apply for funding for Naglazyme. Just last week we found out the Government denied funding. We are in the process of appealing.

5.  Because people have difficulty understanding my speech, I have my parents or sister explain to them what MPS VI is.  I also have an essay that my sister wrote about MPS and MPS VI that I show them.

6.  My Genetic Metabolic Dr keeps myself and family well informed, If we have any questions or concerns we contact him.  My mom who is an RN (Registered Nurse) monitors my health as well.