In 2011 when Hunter was only 8 months he started having seizures. Thankfully the seizures have been non existent for the past 4 years. These seizures started our journey of testing him for various types of diagnosis'. He had many other medical findings that came up but it wasn't until he was 3 years old and we were living on Kauai that we found out he had DiGeorge Syndrome: aka 22q11.2 Deletion Syndrome.
This Deletion Syndrome results in the poor development of several body functions and effects every person differently. We have to run several tests and follow up with several doctors routinely. Hunter has become comfortable with this life and has been so strong during his appointments!
DiGeorge syndrome can include heart disease, poor immune system function, cleft palate, complications related to low levels of calcium in blood, and delayed development with behavioral and emotional problems. Almost everyone with this syndrome needs treatment from specialists in a variety of fields.
This syndrome is very rare and we have the opportunity to attend The International 22q11.2 Biennal Family Conference in Whistler, Canada July 14-16th.
This Conference will be have the leading scientists and physicians from around the world to educate families. There will be family days with leading caregivers and experts. We will finally have the opportunity to meet other families and kids like us!
Any little help from our family and friends will be so greatly appreciated! We would love to take Hunter on this educational and inspiring trip! Thank you xoxo T
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