Amika Needs your help - McCunes Albright Syndrome

13/03/2026

Join us for a fun afternoon/evening all for a good cause.We will be RAISING THE ROOF FOR AMI

There will be lots to keep the kiddies busy while you sit back and enjoy these Amazing local artists ,bring your cooler box with your drinks in and some snacks,we will have snack platters available to pre order,more info to follow.

We look forward to seeing you all 💜💜

25/02/2026

Against all odds our Lord blessed us with a miracle despite what was seen on the x-rays God always has the last say🙌Our baby girls scan came back Normal all glory and honour to our Lord.🙌🙌🙌Thanks for everyone that keeps praying your prayers don't go unheard 🙏

17/02/2026

Today Feels like we are living our worst nightmare.

With any diagnosis, you pray you will be spared the worst of the symptoms...When it's your child, how do you even describe how hard you pray that your child is spared 😥😥😥😥

Amika has been showing signs of Fibrous Dysplasia, where normal bone is replaced by weak, fibrous scar-like tissue. This leads to bone pain, fractures, and deformities.

The pain she has been experiencing in her leg. 😭😭 It is devastating to watch.

She needs to be admitted into hospital to undergo a bone scan / X-Ray.

The Bills keep climbing.

Please support our BackaBuddy that is in Place to help with Amika's Medical Bills, or share this post. Every donation Helps!

LINK IN THE COMMENTS 👇

14/02/2026

28/01/2026

Thanks to Koekie Tuisbakkery you are now able to place orders for these delicious cookies again .

18/01/2026

https://www.backabuddy.co.za/campaign/amika-needs-your-help-mccunes-albright-syndrome?fbclid=IwdGRjcAPZnNpjbGNrA9mc1mV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHl9gGYNg8SH1eUNeo9fKhn0B1i1pANsZbsuGGx7FBzbSnwlcb7L7JXG8Ifbr_aem_fhsg43xdCiOu6FdFlBYtew

Ever heard of a condition that affects bones, skin, and hormones all at once? 🤔

McCune-Albright Syndrome is a RARE genetic disorder that many people don't know about but understanding it can make a huge difference for those living with it, and their families as they need all the help and support, they can get.

Here's what makes this condition unique:
- Fibrous dysplasia - bones develop fibrous tissue instead of normal bone
- Café-au-lait spots - distinctive light brown skin patches
- Hormone imbalances - can cause early puberty and other endocrine issues

The tricky part? Symptoms can vary dramatically from person to person. Some may have mild bone changes, while others face more complex challenges with multiple body systems affected.

Knowledge is power - and sharing information about rare conditions like McCune-Albright Syndrome helps build awareness and support for families navigating this journey. 💙

Please share this post to help spread awareness! You never know who in your network might benefit from learning about this condition.

14/12/2025

Sorry we have been quiet but we have been enjoying our time as a family💜here's an update on Amika,wow is this little girl brave,she underwent her 7 hour water deprivation test with a catheter inserted and handle it like she handles everything life throws at her ,with the BIGGEST smiles 🥹and resilience,nothing gets this girl down .

Praise the Lord her water deprivation test came back NEGATIVE 🙌 we definitely celebrate any victory we get .

Amika is not absorbing iron regardless of being on iron medication her iron keeps dropping so her endocrinologist has now changed her medication and we will see if the new medication will help.Since she was diagnosed with MAS they have been keeping an eye on her thyroid function and her last set of tests weren't great.Her endocrinologist has requested for it to be checked in January again to confirm if she needs to start medication for her thyroid.

We will be enjoying the festive season and the time with our brave little Amika and we will tackle this again next year in January.

Thanks for all the love and prayers and a special thanks to Ampath at Greenacres and all the nurses and Sisters at Greenacres pediatric Ward you guys have become like family Amika is blessed to have each and every one of you in her corner 🙏💜❤️

Please share our back a buddy link below.

https://www.backabuddy.co.za/campaign/amika-needs-your-help-mccunes-albright-syndrome

06/11/2025

This little brave human is 2 today 🥹 In her short 2 years she has endured extensive medical testing, diagnosis, poking and prodding…she is a little champ and we extend our sincerest thanks to all who have and continue to support us on this journey 🤍

28/10/2025

Please share far and wide ,every share helps 💜

28/10/2025

Our next hurdle 😢



The medical team has given Ami a break to enjoy her 2nd birthday party and have a normal childhood experience. What lies ahead will not be a normal two-year old’s experience…



Under specialist supervision, Amika will be undergoing a fluid deprivation test. This test consists of limiting water intake for 8 hours, in what is an already constantly thirsty little girl. Diabetes Insipidus is what is suspected to be causing Ami’s symptoms that include frequent urination, excessive thirst, and feeling weak.



The medical team needs to determine treatment going forward and they can only know what to do by observing her organ responses to this stress test.



The costs keep climbing, and for anyone who has ever visited a specialist, you will know what 15 minutes of their time costs…. now multiply that cost by 8 hours. 😞



We need help. 🙏🏻



If you have the means, please consider donating to Amika’s medical expenses so that we can help give this little girl as normal a life as possible.



Backabuddy link: https://backabuddy.co.za/campaign/amika-needs-your-help-mccunes-albright-syndrome

27/09/2025

This journey is tiresome and trying.

Ongoing testing to establish the full extent of Amika's condition, uncertainty, fear, anxiety, what if's..

The heaviest question remains...what quality of life will her future hold?

Ami underwent an operation and testing this week to establish if her hearing has been affected by the McCune Albright Syndrome. A win for our family - her hearing is intact 🥰