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Justin's’s Story

This is Justin's story...On 12/20/07, Justin was rushed to Connecticut Children's Medical Center by the Life Star team, he was experiencing a long siezure and was turning blue.

Justin had received his four month immunizations on this date and we thought it was due to the shots. He spent 24 hours in the Pediatric Intensive Care Unit and then another 24 hours in the regular inpatient unit. Justin had an EEG done that was abnormal and we were told he may still have seizures. He was put on phenobarbitol and released. Over the course of the next 6 weeks, Justin experienced small seizures at home. On three different occasions he was brought to the ER for seizures that were prolonged. He needed an IV with medicine administered to stop these. We were told Justin had infant epilepsy but that there is always an underlying cause, and finding that cause may be difficult. Justin's medications were adjusted numerous times, until 1/29/08, when he was again rushed to the ER for a prolonged seizure. He was admitted to the hospital for 8 days. Justin was just released today :). Fortunately, Justin has had a normal MRI , but his EEG is still showing abnormalities on both sides of his brain. He is on two different seizure medications, but is still experiencing daily seizures, along with developmental delays. The neurologists say the most important thing is to get his seizures under control. Different blood tests are still being done to try and identify a cause. Justin meets with Birth to Three tommorow and we are hoping this will help with some of the develomental delays. This has been a very scary and emotional experience for my family, but we are staying strong and are remaining optimistic. Justin is a fighter and he will not let this get in his way!!!

Latest Journal Update


I was just looking on this site and realized I have not written an update in a year!  And the last update I wrote, was about entering in a contest for a handicap van.  As most of you probably know by now, during that contest, an anonymous person came forward and purchased us a brand new, 2014 handicap accessible van.  Words will never express how thankful we are and how life changing this was.  Months later, we had received a letter from a man who reported that he had seen the article in the newspaper about our family needing a van.  He reported his wife had recently passed and he wanted to give us his handicap van as he no longer needed it.   We were able to connect him to another family we knew, with a child similar to Justin.   The mom is a single parent and her daughter was a bit older then Justin and she was carrying her everywhere.  The man gave this family his van, that he no longer needed.  

Justin is doing good.  He is in the second grade and the kids seem to really enjoy being around him.  He has a best buddy, who is so great with him!   The teachers are amazing and we could not ask for any better people to be with him during the day.

He continues to have seizures a few times per week, usually in the early morning, but is happy most days.  He goes to CCMC to have his blood drawn every three weeks, due to the  hemochromatosis he is diagnosed with.  He will be having another liver biopsy the end of the this year to determine any further damage done to his liver from the iron.  

Justin's Mimi and Papa  moved back to CT the end of last year which has been awesome!!   We get to see them all the time. 

Kailyn, Jake and Karley are doing great!  Kailyn continues to pursue her dream of performing.  Jake is in preschool and taking karate and Karley is the coolest 1 year old I know :)