Help Extinguish Hunter Syndrome! 

 On October 9, 2005 we welcomed our fifth child into our family. Aiden Jared Spaeth weighed 7lbs 13 ounces. He was such a beautiful baby boy!  After a few minutes of life he started to struggle to breathe, so he taken to the NICU for observation. He remained there for 7 days. A few months later we were told our baby would have to have surgery for a bilateral inguinal hernia repair. We were very nervous but were told this was a common surgery. A few months after that Aiden started developing issues with wheezing and rapid breathing.At this point we were told our son had asthma. Aiden continued to have issues with coughing and snoring at night so were sent to see a Ear Nose and Throat doctor, the surgeon thought we should remove Aiden’s tonsil, adenoids, and place ear tubes for chronic ear infections. So we prepared for another surgery for our baby boy at 18 months, we continued to think this was a common childhood thing. Aiden continued to grow and develop normal with some issues with his breathing. In the summer of 2008, we were getting Aiden ready to attend preschool and the school did a physical therapy evaluation. The therapist noticed Aiden had limited range of motion in his joints and recommended that we take Aiden to see an orthopedic doctor. After numerous x-rays and an in depth visit with the orthopedic doctor, he looked at us and said “I think your son has Hunter Syndrome”. He told us we needed to go and see a Genetics doctor for more testing. One day before our beautiful son’s third birthday, we received the phone call from the Genetics doctor saying your son has MPS.  I fell to the floor in tears, screaming crying, begging and pleading with God. This was the worst news I have ever heard, my son has MPS II (Hunter Syndrome). There is no cure for MPS II!    

MPS II (Hunter Syndrome) which is shortened for mucopolysaccharidoses II is a rare genetic lysosomal storage disease caused by the inability to produce a specific enzyme iduronate sulfatase. This missing enzyme causes the body to store materials in virtually every cell of the body. Hunter Syndrome only affects approximately 500 people and their families in the United States and only 2000 worldwide.  MPS II is life limiting and life expectancies are dependent on level of cognitive and physical involvement.

      In our despair our family and friends rallied behind us. Members of the local F-88 International Association of Firefighters became involved providing assistance to family in our moment of need. Because of their desire to increase the quality of life for Aiden “Help Aiden Extinguish Hunter Syndrome” was born. After a solid year of support from friends of Aiden we are transitioning our efforts and paying it forward in hopes of providing help to other children, adults and families afflicted by this rare disease.

2nd Annual "Friends of Aiden 5K Walk/Run"

Date: June 19th 2010