Meet Leo! He is a 7 month old boy who has a condition called Goldenhar Syndrome, which typically involves one side of the lower half of the face being underdeveloped. Still, Leo is such a charming and lively little boy who loves to socialize with new people! I conducted an interview with Leo's mother, and we discussed about Leo's condition, his cheerful personality, and more.
1. To start off, can you tell me a little bit about Leo?
Leo is 7 months old, and he was born with a condition called Goldenhar Syndrome. Goldenhar syndrome affects each individual differently, but it usually involves one side of the lower half of the face being underdeveloped. There has yet to be a discovery as to why this occurs. Leo’s Goldenhar Syndrome resulted in him not to have a right eye, a missing right side of the lower jaw, an abnormal right ear, a unilateral cleft lip, palate, and nostril(all on the right), an extra digit on his right hand, and skull abnormalities. Leo is also deaf and is showing delays in his physical development.
2. What are some major challenges with having the condition Leo has?
Some of the major challenges with Leo’s condition is the fact that he needs 24 hour monitoring due to his trachy and having to tube feed him instead of orally.
3. What is Leo’s day to day life like and how has it been impacted by his diagnosis?
Leo has a night nurse for 5 nights a week to make sure he is being monitored during the night and do his nightly cares. We are often busy with countless appointments and travelling to and from the hospital. We rarely go anywhere apart from his appointments as it’s quite time consuming and stressful to get Leo and all his gear packed and ready to leave the house.
4. What would surprise people the most about Leo?
I think people are often surprised by how happy he is. Even after his surgeries and being poked with needles, he still manages to smile and laugh.
5. When someone meets Leo for the first time, what do you hope they think?
I always hope they see him as a strong happy baby boy who loves to laugh and meet new people.
6. What are some of your child’s likings? What is his personality like?
Leo is very cheeky and very charming. He loves to do things that get a reaction out of people like pull his feeding tube and laugh every time you pry the tube out of his hands. He will kick whoever is sitting closest to him, grin at you until you smile back and pile all his toys and blankets on his face. Leo is very sociable and is so excited to see new people.
7. What is the most important thing for someone to understand about Leo’s condition?
Leo has no idea at the moment that he looks different or is slightly different and that is the way I’d love to keep it. Leo has such a big personality and his facial differences shouldn’t stop you from getting to know him.
8. Has Leo’s diagnosis affected your job?
I was a mechanic before I had Leo and always thought I’d go back to work after a year. However, due to Leo having so many appointments and needing constant monitoring, I am unable to return to work.
9. Are there any resources which you recommend if anyone wants to learn more about Leo’s condition(s)?
I honestly just used Google to find out about Goldenhar Syndrome. Since everyone is affected in varying degrees, it’s hard to learn about how it may or may not affect someone unless you ask. So I’m always happy for people to ask.
10. Has the COVID-19 pandemic affected Leo’s day to day life?
Yes, when we were in lockdown, a lot of Leo’s appointments and surgeries were pushed back or on hold. Now, they all seem to be happening at once.
11. If you or Leo could tell the world one thing, what would it be?
Learn how to ask questions. If you don’t know what or how then just ask and apologize if it’s considered rude. I love telling people about my special boy.
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