| 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.
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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!
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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.
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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.