We’re standing with Houston to raise awareness for Noonan Syndrome. If you don’t know what Noonan Syndrome is, you are not alone. Here at Oh-Spit, we had no idea about it until our son Houston was born with it. We have set up this blog post to provide some insight into what Noonan Syndrome is & how you can help us spread awareness.
What is Noonan Syndrome?
Noonan Syndrome is a genetic disorder that affects 1 in 1000-2500 people & presents itself differently in each person. Common features of the syndrome include short stature, unusual facial features, heart defects, developmental delays & other physical characteristics that may vary from person to person. People with Noonan syndrome can lead normal lives but require lifelong medical care & support from family members, friends & medical professionals.
February Is Noonan Syndrome Awareness Month
The side effects of Noonan Syndrome can be wide-ranging & serious, depending on the individual's case. It can cause physical appearance issues such as a broad chest, low hairline at the neck, webbed neck skin folds or thickened skin around the eyes. Other side effects include hearing problems, vision problems or breathing difficulties due to enlarged tonsils or adenoids. In addition to these physical issues there may also be intellectual disabilities that affect learning & behavior issues such as ADHD or autism spectrum disorders that need to be managed.
How can you help?
We believe that no family should ever have to go through what we did when our son was diagnosed with this condition without knowing anything about it first! That's why we are taking part in raising awareness for Noonan Syndrome during February which has been designated as "Noonan Syndrome Awareness Month". We invite everyone to join us in taking part in this effort!
One way you can help is by purchasing a ‘his fight is our fight’ sticker from our company website & displaying it proudly, & sharing information with those that ask throughout the month of February as a sign of solidarity for those who suffer from this condition every day. All of the proceeds of this sticker go towards the Foundation to help other families like us. If you purchase this sticker please share with us when you use it with the hashtag #houstonsfightisourfight on facebook & Instagram. The sticker includes free postage within Australia, or $5 international postage.
Furthermore 20% of all proceeds from all items on our website will be donated directly to the Noonan Syndrome Awareness Foundation - an organisation dedicated to raising awareness about this condition!
Here is where you can buy the sticker & support this cause:
https://www.ohspit.com.au/products/his-fight-is-my-fight-sticker-donation
If you would like more on our journey with Houston in finding out about this condition please read our first blog post here:
https://www.ohspit.com.au/pages/about-us
Also, you can subscribe to our email list to receive $5 off on your first order & to receive more updates on Houston as our journey continues!
Together let’s spread knowledge and understanding about what life looks like when living with conditions like these! Thank you for your support!
#Houstonsfightisourfight
Standing with Houston for Noonan Syndrome Awareness
Comment (1)
Hi, I just want to say thank you for spreading awareness of this, it is indeed a rare condition and not many people know about it. this blog has inspired me to talk to someone who knows what having Noonan’s is like. I was diagnosed with Noonan’s while my mom was still pregnant with me and it scared them because they didn’t think I was going to make it, but my parents prayed over me and I will say that by the grace of God and His love is why I’m here today living as if I don’t have Noonan’s. I’m currently twenty, almost twenty-one years old. I had my challenges during my childhood and I still don’t know what to expect in my adult years, but I know that as long as God is in my life, I don’t have to worry much about it. again thank you so much for sharing and I’ll be praying for your little boy.