“My name is Valerie and I have resided in Las Vegas, Nevada, USA, for 30 years. My husband and I have five children aged 18, 15, 9, 4 and almost 2.
Our 4 year old, named RJ has Netherton Syndrome.
During the first six to seven months of his life, we lived in out of hospitals and Ronald McDonald houses – here in Nevada and also in Utah and California – trying to get a diagnosis for what was going on with our baby. RJ was very sickly as an infant and wasn’t growing or gaining weight.
When RJ was two months old, my husband and I (after many, many hours of searching the internet for similar symptoms) found the story of a little boy named Jack, who lives in the UK. Jack also has Netherton Syndrome. After reading his story, we knew immediately that this is what our son had as well.
We were, and still are, so thankful to Jack’s family, that they shared their story online. This allowed us to reach out to them and get help with what kind of care our son needed.
When RJ was 6 months old, we were able to get him to UCLA in California and have his genetic testing done. Finally we got the confirmation that yes he did indeed have Netherton’s Syndrome.
It was scary and we had a lot to learn. Most of the doctors we saw knew nothing of NS and we were grateful that we found online support through nethertonsyndrome.com and the Facebook page that Jack’s family put together for NS.
RJ is now 4 and is such an amazing, strong, happy, silly little guy, who loves everything most little boys love and is such a joy to be around! One of my biggest concerns is making sure that RJ stays this way, and never lets society bring him down or break him.
Because of RJ we do meet a lot of nice, interesting, caring people, who want to be educated and are happy to have met him and thank us for educating them on Ichthyosis.
Unfortunately, we also meet a lot of ignorant, uneducated, not so nice people, who speak before they think and have no consideration for others. I have learned a great deal of patience due to this; before I would be quick to speak back or stoop to their level and then regret it later.
Having RJ and being a busy mom on-the-go, I take him pretty much everywhere with me, and I learned quickly that I couldn’t feed into the ignorance. Not only do I not want my son to feel like there is conflict every time we are in public, I also found that it is much more satisfying to educate the people on his condition and let them feel stupid for speaking out of turn.
However, I am not perfect and sometimes I can’t help but lash out at the ignorant things that come out of people’s mouths or remind grown people that it is not polite to stare!
Just recently, I took RJ to an indoor playground since the weather is getting a little too hot for him to play outside. The man working there, who I believe to be the owner, took one look at RJ and immediately said that he was not allowed to come in. My mom argued with the man – I had not entered yet and wasn’t aware of the situation.
I walked in the door and my heart was broken as I saw this man staring at my baby and refusing to let him come in. He stated that he didn’t want the other kids to “catch” anything and that my son was too itchy. We tried explaining NS to the man and even threatened to complain to the ADA (Americans with Disabilities Act) and to sue him for discrimination if he didn’t let us in. We explained there is nothing is wrong with my son and that the kids inside are actually more harmful to my son than my son is to them. He didn’t care. He couldn’t stop staring long enough to even hear what we were saying. I pulled my phone out and started to take a video of what the man was saying and sadly enough you can hear my 4 year old in the background asking the man why he cannot let us in.
As we were leaving, the man finally decided to tell us that we could come in but if someone complained we would have to leave. My oldest daughter told him it was not worth us spending our money there and we left.
I forwarded a copy of my video to the local news stations but none of them picked up our story, which really upsets me as this would be great coverage for Ichthyosis awareness. If people could see RJ’s story, and recognize him when we are in public, it could eliminate a lot of the heartache, staring and comments that we deal with.
RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well. I hope we can build Ichthyosis awareness up enough so that, even though it is a rare disease, it will not be so uncommon to the public that they do or say things intentionally or unintentionally that hurt people’s feelings.”
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.