hover over thumbnails to see pictures of Will
Will was born in 2003 - he was a strong and cute little baby! Since birth, he has battled constipation (and still does to this day), sensory issues, developmental delays, and an immune deficiency. Much of his life has been shrouded with illness, infections, and doctors visits...but through it all, he still won our hearts!!!!
Due to a major regression, lack of speech and eye contact, and repetitive and obsessive behaviors, he was diagnosed with Autism before the age of 2. I was DETERMINED to not let a diagnosis chart the course of Will's life. Through many hours of home based therapy (5 days a week), a lot of hard work and many tears (for the first 3 1/2 years of his life) progress was made. At age 3 1/2, he moved up the 'autism spectrum' to PDD-NOS (another form of autism - more mild in it's course). We continued with home based therapy and continued to explore different ways to reach out to Will and help him find his bearings in this world.
At age 5, the developmental specialist felt that he had progressed so beautifully that he didn't fit the diagnostic criteria for PDD-NOS any longer and he now carries ADHD, OCD as a diagnosis. He still struggles socially and still has some issues, but he is so high functioning that - to someone who had never met him before, he appears 'typical' for his age group! He's an amazingly charming and sweet boy with SO much heart and compassion!
His first years of life were spent in and out of hospitals and doctor's offices as he was sick quite often. He was finally diagnosed with Primary Immunodeficiency Disease (also known as PIDD). Due to recurrent and severe infections (despite a daily low dose antibiotic to prevent infections), it was decided that he needed to start Gammaglobulin Replacement Therapy (also known as IVIG or Sub-q Ig). Will began receiving weekly infusions of blood product (2 needles that run gammaglobulin over the course of 2-3 hours) at the age of 4 1/2 and continues to receive them to this day. The infusions have been life saving and life changing...he went from missing over 60 days of school last year to not even a fraction of that this year so far!!!!
In 2004, Will was diagnosed with a Chiari Type I malformation with restricted Cerebral Spinal Fluid Flow (meaning that the cerebellum herniated down into the brain stem restricting the CSF flow in his brain). We continue to watch this condition and Will needs to be careful as simple small accidents that involve the head can be quite serious with this condition.
Recently, Will has been struggling getting sick anytime he goes for more than 2 hours without eating (during the day). It was found that he likely has a condition that is called Ketotic Hypoglycemia (meaning that his body is having issues with blood sugar regulation and it makes him sick). We have modified his diet and he appears to be doing much better with this change in place.
Through the years, we have learned SO much from our sweet Will. He has an amazing spirit, a tender heart and enough energy to light up the world! He is the light of our lives and the most amazing little boy with so much potential - and with every new day that dawns - we look forward to seeing what new and incredible lesson Will has to teach us!