Miliahs Journey - 16q11.2q21 dup

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Miliahs Journey - 16q11.2q21 dup Living with a rare genetic chromosome disorder 16q11.2q21 (less than 10 people in the world) A Rare Warrior - One in a Million.

Miliah was diagnosed with a rare chromosome disorder 16q11.2q21 duplication. (Less than 10 people in the world known) Miliahs journey has been tough and theres so much uncertainty about the future as there is hardly any information on this. However Miliah continues to smile and have the strength of no other ive seen :)

Miliah had her swimming gala on Saturday, she had the best time and her team came first... Go Red Bishops!!!!
08/11/2026

Miliah had her swimming gala on Saturday, she had the best time and her team came first... Go Red Bishops!!!!

06/11/2026

Feed the monkey 🐒

06/11/2026

Trying so hard, so proud of this munchkin 💖

🥰
06/11/2026

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My gran and miliah 8 years ago 🫶 missing my gran so much 💔 My gran was so proud of Miliah for every achievement, sympath...
03/11/2026

My gran and miliah 8 years ago 🫶 missing my gran so much 💔 My gran was so proud of Miliah for every achievement, sympathetic for every hurdle and gave so much love and care for her.

How do you carry on with 100%, when inside you're running on empty 😭 I'm really trying to be strong for the girls, for the family but it's really a whole new heartbreak and feeling.

❤️ **HELP MILIAH FIND HER VOICE — EVERY WORD, EVERY MOMENT, EVERY LITTLE VICTORY MATTERS** ❤️Some children find it easy ...
30/10/2026

❤️ **HELP MILIAH FIND HER VOICE — EVERY WORD, EVERY MOMENT, EVERY LITTLE VICTORY MATTERS** ❤️

Some children find it easy to tell you about their day, explain what they're feeling, ask questions, or simply say, "Mommy, I love you."

But for my beautiful daughter, Miliah, communicating isn't always that simple.

Many of you have followed Miliah's journey and know that she already faces challenges because of her rare chromosome duplication, 16q11.2q21. We have navigated medical appointments, hospital stays, therapies, and so many uncertainties together.

But our journey has brought us another challenge.

💔 **Miliah has been diagnosed with moderate apraxia of speech.**

And today, I want to share what that means for our girl and why we are asking for your help.

🧠 **WHAT IS APRAXIA OF SPEECH?**

Apraxia is a neurological speech disorder that affects the brain's ability to plan and coordinate the movements needed to produce speech.

Imagine having something you desperately want to say, knowing what you want to communicate, but struggling to get your mouth to produce the words.

That's the difficulty children with apraxia can experience.

It's not that they aren't trying.
It's not that they don't have anything to say.
And it's certainly not that they don't have thoughts, feelings, dreams, and things they want to share with the world.

Sometimes, the words simply don't come out the way they want them to.

Children with apraxia often need specialised speech therapy to help them practise and coordinate the movements required for speech. Their progress takes time, patience, repetition, and the right support.

And that's where we need your help. ❤️

🗣️ **HELP US GIVE MILIAH THE SUPPORT SHE NEEDS**

We are raising funds for two very important things:

❤️ **1. SPECIALISED SPEECH THERAPY**

Speech therapy can help Miliah work towards clearer, more effective speech and develop her communication skills.

Every therapy session is an opportunity to practise, learn, and work towards communicating more independently.

We want to give her the opportunity to reach her potential, celebrate her progress, and keep working towards her communication goals.

📱 **2. AN AAC COMMUNICATION DEVICE**

AAC stands for Augmentative and Alternative Communication.

It's a communication system that can help someone express themselves when speaking is difficult. Depending on the system, it can use pictures, symbols, words, and a voice that speaks aloud.

For Miliah, an appropriate AAC device could provide another way to express her needs, share her feelings, make choices, and connect with the people around her.

It would give her an additional way to communicate while she continues working on her speech.

Because every child deserves the opportunity to be heard, understood, and included. ❤️

💔 **WHY WE ARE ASKING FOR YOUR HELP**

As Miliah's mom, I want nothing more than to give my daughter every opportunity to grow, learn, communicate, and experience life to the fullest.

I want her to be able to express herself.
I want her to have opportunities to connect with others.
I want her to feel understood.
And I want her to know that her voice matters, no matter how she communicates.

I cannot promise that this journey will be easy. I know there will be difficult days, countless hours of practice, and challenges we haven't even encountered yet.

But I also know that Miliah is so much more than her diagnoses.

She is a little girl with her own personality, her own feelings, her own beautiful way of experiencing the world, and so much potential.

**Her diagnosis may affect how she communicates, but it does not define who she is or limit the love, thoughts, and feelings she has inside her.**

As her family, we want to give her every possible opportunity to let those thoughts and feelings shine through.

Unfortunately, specialised therapy and communication equipment can be expensive, and we cannot do this alone.

🙏 **HOW YOU CAN HELP MILIAH**

If you are able to contribute, no donation is too small.

Every contribution will help us work towards funding Miliah's speech therapy and AAC communication device.

If you cannot donate, please consider sharing this post. You never know who might see it, who might be able to help, or how far one small act of kindness could reach.

Every donation, every share, every kind word, and every bit of support means more to our family than you could ever know.

You won't simply be helping us raise money.

You'll be helping us give Miliah more opportunities to communicate, participate, express herself, and be understood.

❤️ **PLEASE HELP US GIVE MILIAH THE OPPORTUNITY TO FIND HER VOICE.**

Because behind every difficult word is a little girl trying her best.

Behind every therapy session is hope.

And behind this fundraising journey is a family who believes in their little girl and wants to give her every chance to thrive.

Thank you for being part of Miliah's journey, for supporting our family, and for helping us fight for a future where Miliah can communicate in the ways that work best for her.

From the bottom of our hearts, thank you. ❤️

https://www.backabuddy.co.za/campaign/miliahs-rare-genetic-chromo-journey

Miliah saw a new speech therapist today for a one-on-one session. She gave us some tough but honest answers about Miliah...
26/10/2026

Miliah saw a new speech therapist today for a one-on-one session. She gave us some tough but honest answers about Miliah. Miliah has been diagnosed with moderate apraxia, which means the brain-to-muscle signals for speech are physically very difficult for her to navigate. We learned she will likely struggle with full sentences and clear pronunciation, but we can work on short phrases and explore communication devices in the future. Processing a lot of emotions right now, but glad to have an honest professional in our corner.

First school outing today!!! First-time she will be in a school bus. Shes super excited 😄
22/10/2026

First school outing today!!! First-time she will be in a school bus. Shes super excited 😄

Miliahs had a really good week at school learning about the water cycle, she had music class, cooking and swimming which...
10/10/2026

Miliahs had a really good week at school learning about the water cycle, she had music class, cooking and swimming which she absolutely loved. We celebrated Nana's birthday which was awesome.

I havent been posting as there's been personal stuff to going on. By far the toughest part of this week was explaining to the kids granny went to the sky 💔💔😭😭😭 its going to be a long and hard journey forward. I will not be posting for a bit.

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