The Genetic Counselor called from Children’s around 6 pm to confirm that Jayden DOES NOT have Hurlers. Syndrome, one of the 11 potential Syndromes under the umbrella of MPS, which we now know he has for sure. We are relieved. Hurlers was one of the two they suspected and effected boys and girls. The thrid test results will come on Monday and we are hoping it will confirm Hunter’s Syndrome because it boasts some hopeful success stories and has treatment. It also is the only syndrome that effects only boys. the other 9, which are less likely for Jayden to have effects boys and girls so we are leaning towards, as is the Dr., Hunter’s. If it comes back positive, we will meet with a specialist as early as Tuesday and begin more testing to research the severity of the disease thus far and begin enzyme replacement therapy once a week at Children’s in Chicago. Treatments will not cure MPS but will drastically reduce the onset of the progression of the disease. I think it’s like a weekly cleaning of his system, injecting him with working enzymes. We will let you know more info as we learn about it.
Again you words and prayers continue to sustain us and even though more info is good, there are moments that we struggle. However, we spent the later part of our evening laughing as we watched our litle boy tease Aunt RiRi (or Ro Ro) as he said it, get chased and tickled by Bubba and Uncle Chad, and give nuckles to Uncle Dan, Uncle Bill and Aunt Jill. Ama was lucky as was Daddy and I to get some hugs in the mix. His smile lights up a room and adding laughter to it just brings our souls pure joy.
Here is a note from his Special Ed teacher…
“Jayden did a great job in speech today. We worked on asking for things (I want…). He identified blue and tried very hard to say it! He also counted to 2. He has “please” down and we just can’t resist his smile when he says it! Have a great day!”
the bus driver and assistant this afternoon were laughing when I got Jay off the bus. I guess the entire trip home hie was singing about his dada! They said he should go on american idol!
Thanks for your listening ears, your prayers, you are the ones helping us carry this burden as we try to stay focused on the light and optimistic about the future.
Here are some 2007 pics of Jayden we were talking about tonight that we just loved!
Great America with Aunt Row Row!