Meet Amelia! You can always find her playing on the swing and swimming. She has Apert Syndrome, which is a bone fusion condition. However, she is the sweetest little girl and has the superpower to make anyone and everyone smile! I conducted an interview with Amelia's mother, and we talked more about Amelia's diagnosis, her hobbies, and more.
1. To start off, can you tell me a little bit about Amelia (her age, more about her condition(s), etc)? Amelia just turned 4 years old! She has Apert Syndrome which in short is “premature fusion of bones”. It encompasses other conditions such as cleft palate, syndactyly, polydactyly, craniosynostosis, klieppel fiel, and proptosis.
2. What are some major challenges with having the condition Amelia has? A major challenge with having Apert Syndrome is all of the surgeries she has to endure along with gross and fine motor skills. She’s cognitively “normal” but since she has physical differences, she struggles with some everyday activities.
3. What is Amelia's day to day life like and how has it been impacted by her diagnosis (for example, therapy, medicine, etc)? Her day to day activities are pretty average for a normal 4 year old. She gets therapies (occupational and physical) in her preschool and now that she’s past most of her major surgeries, we have approximately 2 physician appointments a month.
4. Are there any medical treatments Amelia follows?
The only medical treatment Amelia follows is her therapies!
5. Has Amelia's diagnosis affected the way she learns?
I don’t think she’s affected on how she learns. She wears glasses and has a hard time writing, but she’s still a little smarty pants!
6. What would surprise people the most about Amelia?
I think the most surprising thing about Amelia is how “Normal” she is! She’s hilarious and is just like any other 4 year old even though she looks different!
7. When someone meets Amelia for the first time, what do you hope they think?
I hope they see past her differences. I hope they think how funny and kind she is.
8. What does Amelia like to do for fun/hobbies?
Amelia is pretty easy to please. She loves playing with dolls or paw patrol figurines. She likes swimming and playing her Kindle. She enjoys swinging and gymnastics.
9. What is the most important thing for someone to understand about Amelia's condition?
The most important thing to understand is that she’s just like any other kid! Treat her with kindness!
10. Has Amelia's diagnosis affected your job?
I think Amelia’s diagnosis has definitely affected my job. I treat those with special needs with a little more patience and normalcy then I used to. I also sometimes get anxiety in the OR thinking of what Amelia has to endure.
11. Are there any resources which you recommend if anyone wants to learn more about Amelia's condition(s)?
To learn more about apert syndrome you can check out her facebook page “Amelia’s Adventure with Apert Syndrome” or Children's Craniofacial Association.
12. Has the COVID-19 pandemic affected Amelia's day to day life? If so, how?
She missed out on therapies because of COVID-19. Other than that, we’ve been doing our best to keep her life as normal as possible!
13. If you or Amelia could tell the world one thing, what would it be?
Choose Kind. In a world where you can be anything, be kind.