Hello -- My daughter Lace, born in 2005, was diagnosed autistic in 2009, then re-diagnosed in 2015 as MPS IIIA. There was a lot of waste effort and money spent on the wrong things, and a lot of opportunity that might have strengthened her lost. As was the chance to advocate and support better research and cure development.
All the best,
Tim
CA
Jonah was diagnosed MPSIII C out of the blue at 2 years old, he was asymptomatic. The early diagnosis saved his hearing. Our doctors sent us to an ENT upon diagnosis and said he'd need ear tubes. Jonah was hearing at 50%, the fluid drained out. He could then hear, he was assigned a speech therapist and started early intervention preschool. Upon diagnosis we were told that Sanfilippo caused hearing loss and most children never developed their speech because of cognitive issues.
Last week Jonah won an award for the poem:
Soccer Player
I scored a goal.
The ball went into the net.
I run after the ball.
My feet smash the grass.
Oh yeah!
The ball went into the net.
I run after the ball.
My feet smash the grass.
Oh yeah!
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Early diagnosis is crucial! Please participate in Mission: Hide and Help. All of our Sanfilippo children should have the same opportunity to early intervention and palliative care. https://missionhideandhelp.org/
Please share with everyone, everywhere.
Thanks,
Jill
