Meet Maryam! She is a bright little girl who is a great speller and can play many tunes on the piano.
Maryam has CHILD syndrome, a rare condition that effects about 60 people worldwide. Still, she has achieved so much, with her most recent accomplishment being taking her first walking steps! This interview is conducted with Maryam's mother, and we discuss more about Maryam's wonderful achievements, the effect of the COVID-19 pandemic on Maryam's day to day life, and more.
1. To start off, can you tell me a little bit about Maryam?
Maryam is 5 years old. She was born with CHILD syndrome, a rare syndrome that affects about 60 people in the entire world. Her right side is smaller than her left side and she is missing a kidney on that side. She was born without hair on the right side as well. Her right hand and foot are also smaller than her left. CHILD also comes with a skin condition so she needs a certain cream daily to prevent her skin from flaking.
2. What are some of Maryam's challenges?
Because Maryam's right lung is small, her lung collapsed when she was 6 months old which forced her to get a trach and she is currently vent dependent. Through therapy though, we are weaning her off the vent slowly and hope that her lung grows healthy enough to be ok without it. Also, because she has trouble swallowing and retaining food, she has a GJ tube for eating continuously. Her ability to walk has been affected because of her feet difference in height, but with therapy and a shoe step, she has been working on walking and strengthening her muscles.
3. What is Maryam's day to day life like, and has it been affected by CHILD Syndrome? If so, how?
She has a morning and night medicine routine to keep her lungs open and healthy including a chest PT vest which helps keep mucus from building up in her lungs. She gets physical and speech therapy weekly to help her progress and get stronger.
4. What would surprise people the most about Maryam?
She is a great speller. Even though she can't use her voice, she is able to communicate through spelling on her keyboard. She surprises us with the requests she makes and makes us laugh often. She loves to read and catches onto mistakes if we say the wrong word. She is also very attune to music and beats, and knows how to play several songs on the piano! :)
5. When someone meets Maryam for the first time, what do you hope they think?
I hope they see her for the smart intelligent human she is. I hope they see her as a 5 year old who just wants someone to read to her and play with her like any other 5 year old.
6. What are some of Maryam's likings/hobbies? What is her personality like?
She is very particular and orderly. She loves to keep her toys a certain way and always orders us around! She loves music, bubbles, and books. You can read to her all day and she would love it! She has an ear for music too and that's one of her favorite therapies!
7. What is the most important thing for someone to understand about Maryam?
That although she is fragile and has medical equipment, she is just like any other kid who loves to be read to and entertained.
8. What is a recent accomplishment/ milestone of Maryam?
She recently took a few walking steps which was a huge deal!
9. Are there any resources which you recommend if anyone wants to learn more about CHILD Syndrome?
She has a Facebook page called CHILD syndrome - Team Maryam that you can follow to stay updated on her progress.
10. Has the COVID-19 pandemic affected Maryam's day to day life? If so, how?
For sure. Because she is medically fragile, we have been strict on not inviting friends or family over which has made it difficult for me and her. She leaves the house less and visits family less because of it. So it definitely limits the people we see.
11. If you or Maryam could tell the world one thing, what would it be?
No obstacle is too hard to overcome. Every obstacle is merely an opportunity to grow and reach a higher potential.
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