Fast forward 9 months later to our greatest fear. He was Diagnosed Aug 31 2015 with Emanuel Syndrome. This affects his 11th & 22nd chromosome. We were told it’s very very bad, he may never walk or talk. This is where we began his motto “He Can and He Will End of Story!” September 11, 2015 was his first of 22 surgeries. He was severely malrotated. Had a diaphragmatic hernia and we placed a feeding tube as he couldn’t eat orally.
He has had many ups and downs in his short life, but has never given up, in fact he works even harder to overcome and adapt to what ever comes his way. He’s had many surgeries to overcome from a mass in his brain, cleft palate repair and 2 reoccurrence from his diaphragm. Austin has significant hearing loss in his right ear. However nothing holds this kid back!
Austin currently has another reoccurrence and Deanna and I have finally found a surgeon that will perform a very risky and difficult surgery to repair the rupture at the end of January. This will be Austins hardest to bounce back from. He will probably be in the hospital for an extended period of time. We ask for your thoughts during this time and any support you could give. It is going to be a difficult time on all of us.
Today December 22 Austin had A febrile seizure out of the blue. He has Dysautonomia where he can’t control his body temp so he just spikes a high body temp for no reason. Today was his 5th it lasted about 2 minutes this time. Deanna and his nurse Kathy rushed him to the hospital. He was not himself. He is normally the happiest kid on earth. 3 days before Christmas! This wasn’t on our Christmas list!
Austin is a true hero! He fights battles every day! This kid is a rockstar! He is doing things we have been told he wouldn’t do. He’s walking with a walker. He rides his bike all around the house. He is now walking while holding on with one hand. He is communicating with a special computer that he uses his eyes to say words and phrases.
He amazes us everyday! He brings a smile to the face of everyone he encounters.
Please keep us all in your thoughts over the next few weeks as they will be difficult to over come!
Merry Christmas and Happy New Year!
- Mark Eichorn
- Marci Petter
- Malissa Ballard
- lynn thomas
- Eva C Koblosh
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