Little battlers: One amazing girl

Last updated 05:00 11/02/2013
RARE CONDITION: Emily is one of only 180 sufferers worldwide of Congenital Central Hypoventilation Syndrome.

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When my daughter Emily was born in 2000 she was unable to breathe on her own and after 24 hours she was transfered from Tauranga Hospital to Waikato Hospital.

After 10 days of testing they had no idea of what was wrong with her so she was transfered to Starship Hospital's paediatric intensive care unit.

The next day they said she had a rare condition called congenital central hypoventilation syndrome, and she was among only 180 sufferers worldwide. She was then trached and fully-vented via the trache tube until she was old enough to stay awake and breathe on her own during the day time.

She has had many operations, two to put portacaths in to make it easier to give her IV meds, plus many other operations to check on her airways.

She attended normal kindergarten with a carer by her side in case she needed any medical assistance.

On April 12, 2005, her trache tube was finally removed and she went on to BiPAP - a mask to keep her breathing during sleep.

She often contracts pneumonia and upper airway infections, and she spends a bit of time in Starship Hospital for sleep studies.

Tomorrow she will have another operation to remove a seborrhoeic nevus from her scalp. Every time she has an operation it puts her at risk as she doesn't remember to breathe. Her last operation was just for grommets, but she was fully-vented for five days after that operation.

Emily's condition means that her autonomic functions don't work and she needs to be reminded to breathe during the daytime. Everything we do naturally, her body does not, so she has a carer with her 24/7.

She also has complex partial seizures and mid-face hypoplasia due to damage from the BiPAP mask.

Despite all of this, Emily attends is at intermediate and she loves it. She enjoys bike riding and is a social, normal 12-year-old girl.

She can't attend swimming at school or school camps due to safety issues but this has never stopped her from being such a positive, happy child.

Sometimes people can be nasty when she does not manage to keep up with her peers.  But like I tell her she is one in a million - one amazing girl. I'm so proud of what she has achieved as I was told there is a good chance she would never walk or talk, let alone what she has managed in her life. 

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