Ichthyosis Awareness Month: Casey and Chaz’s story: “We see Chaz as our one in a million and we are so lucky to have him in our life.”

Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton’s Syndrome and has just turned one.

I am so glad we met – Adam and I are travelling to Ballarat to spend a day with the family soon. 

Meet Casey and Chaz.

“Hi my name is Casey in 26 years old and I live in Ballarat in Victoria. I’m married and we have a very special man named Chaz. Chaz is one and is living with Netherton’s syndrome. The first 6 months was such a rocky road with spending 6months in the Royal Children’s Hospital fighting infections, high sodium and failure to thrive. We were first told by the doctors that the first 12 months will be the hardest with Chaz having to build his immune system up, so we prepared ourselves to be in and out of hospital.

Pregnancy and labour were pretty good. The first 2hr of Chaz life was spent on my chest and it’s the moment I will treasure forever. That moment of excitement, joy, unconditional love that you final have your health baby in your arms. Not knowing that anything was wrong or what road was ahead of us was not on our mind. Chaz spend the first 5days in special care unit as doctors where trying to work out what was going on with Chaz skin. Day 5 Chaz was rushed to nicu at The Royal Children’s Hospital has he was servilely dehydrated and had high sodium. Doctors run a skin and hair biopsy for NS but it come back inconclusive. 

It wasn’t until he was 5months old that we had it confirmed through a genetic research program that Chaz had NS. When signing the papers for the research we were told that they sometimes find other conditions and that’s what happened. Chaz is living with Netherton’s syndrome and Jeune syndrome. We see Chaz as our one in a million and we are so lucky to have him in our life.

Having a child with a rare skin condition has made such a stronger more confident person. I have learnt things I never thought I would have. During the journey there were many tears, smiles and doubt along the way. The hardest thing I find I have to deal with are peoples questions and finding the right words to explain it also the way people look at us (like we have let our child get sunburnt?). I know that as time goes on I will find it easier to explain. Chaz’s routine of bathing, feeding, and nappy changing takes a long time to do as he doesn’t like his creams and will often cry. 

One thing I wish I could experience was the new born smell, Chaz isn’t able to have the normal baby stuff as his skin is so sensitive. We have learnt to adapt to all of this and we don’t know any different. Since joining Facebook pages I like to support other people going through the same situation. I find it easy to talk to people that is in the similar situation. 

Chaz is such a happy cheeky little boy and I’m so glad that he is mine.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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