Aidan Musa’s Story by Jannah Hayah

Written by Guest Writer

January 13, 2021

He was born on 14th April 2017 via emergency c section when the doctors struggled to find his heartbeat.  Shortly after birth the doctors told us that Musa may have Down Syndrome.  I didn’t like the doctors choice of words which were “baby has features that don’t belong to mum and dad”.

I was heartbroken and didn’t know what the future would hold for my tiny baby.  I cried and grieved over the child I thought I’d have but didn’t. One thing I knew was I would love him dearly.

I had so many negative perceptions about down syndrome and the internet was good at telling me all the things he wouldn’t be able to do or would find difficult. I remember the puddles of tears I cried for the next few months to come and silently hoped and prayed that the doctors would be wrong and God would heal him. 

Musa struggled with his feeding.  The doctors diagnosed him with an unsafe swallow and at 6 months they decided he needed an Ng tube. At 2 years old, Musa had an operation to get a gastrostomy tube put in his tummy.  His unsafe swallow had not improved. 

Three years on I wish I could tell myself what I know now.  Musa is the most determined child I know.  At 14 months he was holding on to furniture and walking.  Musa is a happy boy, he loves playing with cuddly toys and loves reading.  He is still non verbal but enjoys signing, He loves his big brother and  sister who are his biggest cheerleaders. Today we have over 20,000 people who follow us over social media. They leave messages saying how he brightens up their day.

Often when people hear about his diagnosis they start off with I’m sorry, but there’s so much beauty in Down Syndrome.  Oftentimes Musa’s beauty takes my breath away, his sparkling almond shaped eyes, a captivating smile that often leads to laughter so infectious that even the hardest off hearts would melt in response. 

For a long time I wanted to prove to the world that he’s just like any other kid, but I soon realized that Musa doesn’t have to be like everyone else – he can be different and that’s ok. He is truly special in his own way.

 After all “you can’t blend in when you were born to stand out”.

Let’s allow our stereotypical reality to crumble and truly get to know the beautiful person hidden behind the label. Musa may be developing differently to other children but he’s reaching his own goals and milestones along the way, there’s plenty of reasons to feel positive about and focusing on his little victories is what I choose to concentrate on everyday.

Musa with his feeding tube

Musa with his brother and sister

Musa’s infectious smile


  1. Leonora

    I remember seventeen and a half years ago the paediatrician saying “features characteristic of Down’s syndrome” and I laughed saying we all have almond-shaped eyes in our family – then he pointed out certain other things: the hands, the feet, the skin. Everyone has value, sometimes unquantifiable, and my 17-year-old son has brought sunshine to many people just by casual conversation. Yes, let’s embrace individual specialness.

    • Erika Petrie

      Absolutely! Thank you so much for your valuable comments…it is indeed all about appreciating, respecting and celebrating different abilities and how these diverse achievements and talents enrich our lives!


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