A Guest Post by Sarah
Tomorrow will be a very special day for me and my family. The 30th of September is Microcephaly Awareness Day. "What's Microcephaly?" I hear you say. Well Microcephaly is a neurological disorder that means the circumference of the head is smaller than it normally should be because the brain has not developed properly or has slow or even halted growth. Micro means small and cephaly means head. Microcephaly affects 2-2.5% of the population, which actually makes it more common than Autism! Each case of Microcephaly is different; with some children only having mild delays and others more severe. In most cases it is caused by a genetic abnormality.
Babies may also be born with Microcephaly if, during pregnancy, their mother abused drugs or alcohol, became infected with a cytomegalovirus, rubella (German measles), or varicella (chicken pox) virus, or was exposed to certain toxic chemicals. Depending on the severity of the accompanying syndrome, children with microcephaly may have impaired cognitive development, delayed motor functions and speech, facial distortions, dwarfism or short stature, hyperactivity, seizures, difficulties with coordination and balance, and other brain or neurological abnormalities.
So why is this important to me? Well on the 25th Jan 2008 I gave birth to a little boy. His name is Dillan and at 6 months old he was diagnosed with Microcephaly. I had never heard of it before, most people haven't. Ever since that day our life has been filled with therapies, appointments, dietary plans, IEP meetings, continence products, sensory equipment... It certainly has been a rollercoaster but Dillan is an adorable little boy who has a learning disability, double incontinence, enamel defects, short stature, food intolerances and a huge personality. He attends SN school and loves it.
I don't want you to say sorry. I am not sorry I love my son just the way he is. He wouldn't be him otherwise. That may be an odd concept to you but would you change anything about your child? Would they be the same child without their cheeky smile or infectious laugh?