One in One Million - Baby Ethan
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From Kirsty Bateup (Ethan's Mummy)
Our one in 1 million baby... So I thought I better share a little bit of Ethan's story so far....
Ethan is our youngest child of five he is 6 months old.
After nearly a month in hospital ( of course all over Christmas and new years so we were separated from all the kids) Ethan was diagnosed with Periventricular Nodular Heterotopi ( in layman terms it's an extremely rare brain disease... His brain did not form properly and he now has a cluster of lesions deep on the left side of his brain) There is only three other males in the world that has been diagnosed with this so he has all the doctors unsure of Ethan's future! It causes Ethan to have dacrystis seizures ( only one in 1 million children are diagnosed with this form of seizures) Ethan has at least 2 to 3 seizures every hour I can't say the stress we feel everytime he has one.
Ethan has responded poorly to antiseizure medication ( they can't ever stop them) and one of the medication and he's on can only be used short term because it can send you blind.
Ethan is also suffering global development delay ( he's not doing what he should for his age his hands are always in a fist and has poor control over his arms ect)
Ethan is also having feeding issues, he chokes even on breastmilk... Two days ago he was diagnosed with larynsumalacis ( sorry I'm not too sure how to spell it... It's something in his throat it that's collapsing when his breathing therefore causing him to choke) but he's been referred to Lady Cilento for a surgery.
He will also need a surgery in the near future for excess fluid on his brain.
It is a constant battle with doctors and appointments to trying get the best help for our son.
It is so frustrating because most doctors say it is above their head
Every day is a waiting game to see how Ethan is going to go and we have no idea of what the future holds for him.
One thing we know for sure is he is fighter just like his daddy.
