Looking for feed back -going to A.I.Dupont

[Guest guest]

Hi,

I am a mother of a 4year old boy with Type II colleganopathy.

Complications include hearing loss, restrictive lung disease,

tracheo, broncheo, layringomalacia. We are going to A.I.Dupont to see

an Orthopedic, genetic and pulminary specialist for some answers. We

have been living with no long term diagnosis for 4years now and we

are excited to maybe hear some news we can live by.

My son " Dillon " has been having pain in his legs(knees), back and now

neck. Sometimes it hurts him so he can't walk. My heart breaks

because know one(doctors) will help him.

I am wondering if ANYONE out there has a young child with this. Or

symtoms. Did I tell you he has a trach and is on a ventilator 18-20

hours a day.

Feed back on this would gratefully be appreciated!!

Lost in Conneticut