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| Who We Are |
In October of 2005, Aiden was born to parents Jared and Kristin, their
fifth child. He weighed 7lbs 13 ounces and was such an absolutely
beautiful baby boy! After a few minutes of life he started to struggle
to breathe, so he was taken to the NICU for observation, where he
remained for 7 days. This was just a glimpse of events to come.
A few months later the Spaeths were told that Aiden would have to have
undergo surgery for a bilateral inguinal hernia repair. They were very
nervous but were told this was a common surgery. Then again, a few
months later Aiden started developing issues with wheezing and
rapid breathing, and was diagnosed with asthma. Aiden continued to
have issues with coughing and snoring at night and was sent to see a
Ear Nose and Throat doctor. The surgeon thought it would be prudent to
remove Aiden’s tonsil and adenoids, and place ear tubes for chronic
ear infections. So the family prepared for yet another surgery for
thier 18 month old. Always positive, the family pressed on with what
they believed was best for their child.
In the summer of 2008, Aiden was getting 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
he be taken to see an orthopedic doctor. After a thorough evaluation
and numerous x-rays, the doctor looked at Jared and Kristin and told
them, “I think your son has your son has Hunter Syndrome” and then
sent them to a geneticist for confirmation. And so after genetic
testing and extensive waiting, one day before Aiden’s third birthday,
he was officially diagnosed with Mucopolysaccharidoses type II (MPS
II) or Hunter Syndrome.
Jared reached out to his extended family, the firefighters of
Wright-Patterson Fire Department, for support. Hearing his story and
having only a vague understanding of the needs to come, members of the
department helped to start fundraising and raising awareness about
Hunter Syndrome. The results have evolved into an organized effort
that is now what you see before you today; a non-profit organization
known as ‘Help Extinguish Hunter Syndrome, Inc.’
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