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 :)

04/04/2026

Yesterday I was teaching miliah how to swim and how to put her head under water without freaking out. She did so well and loved every moment of it!!!

02/04/2026

I've been reluctant to post here because of judgement and people having their 2 cents about Miliahs diagnosis not being real.

However this is about miliah going through life with the rare chromosome disorder and all the good, the bad. This is to create awareness for people living with rare disease and what challenges one might face.

Lately miliahs been complaining of pain in her mouth and her tummy area where she had the peg tube. She will be going to the dentist on the 22nd April. She needs to see the gastroenterologist as well but it's a pay and claim so that has to wait for now.

She started with her compulsive scratching again this time on her face, no matter how many times you ask her not to or pull her hand away she still does it, even in her sleep. 😞 She struggles to sleep especially without any sleeping aids she becomes restless.

17/03/2026

How awesome is this!!!! Santa Prinsloo really stunning work, beautiful and powerful all in one ❤️

28/02/2026

Happy rare disease day
Unique - Rare Chromosome Disorder Support Group

Rare Diseases South Africa NPO 120-991

Address

Telephone

+27610778015

Website

https://www.backabuddy.co.za/miliah-prinsloo

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Helping Miliah

Miliah has been in and out of hospital since three weeks old and after numerous drs and specialists we are still no closer to a solid answer. Miliah receives on going physio as she has developed slower than most children and she also sees a speech therapist every two weeks. She sees a neurologist in August and might need to see a cardiologist before end of the year as well. Miliah has triangular alapecia which means her hair does not grow in specific areas - he will need hair follicle implants in the future.

Miliah will need to attend a special needs school however it has turned out to be quite costly so any donations will go towards school too.

I am looking for any donations that will help Miliah in her medical treatment journey.

Please go through the timeline to see her story from birth until now...