Jana… meet our precious Angel…

17 January 2025

She is the daughter of my amazing son, Juan, and his beautiful wife, Katja.

As a couple, Juan (his business on the blue link) and Katja always amaze me with the way they deal with any challenge. They are deeply grounded and work extremely well together… and they work hard. They bought a share of our farm, Loch Loerie, and built a tiny home and workshop there. I’m always amazed by how efficiently and neatly they handle everything, with such meticulous and practical precision—it’s truly inspiring!

Slideshow: Building a home

Jana’s 1st birthday

As I mentioned—and I may be biased—but my children are truly the best parents. They are incredibly creative, and for Jana’s first birthday, we received this special piece of bark:

After her 1st birthday, my husband, Bethesda and I began to notice little things that Jana was doing, or rather, not doing.

As time passed, it became increasingly clear that something was amiss, and we knew we needed to have a conversation with our children.

It took us a while and was incredibly difficult, but as parents, they had certainly noticed, and it was undeniable. Even though Jana was taken to Occupational Therapy since she was 8 months old, she just did not meet important milestones and never started to crawl or walk.

Being the amazing parents they are, they accepted the challenge bravely and continue to create beautiful moments with Jana.

Throughout that year, we managed to find opportunities to first speak with our son and gently introduce the topic. Later, we broached it with our beautiful daughter-in-love, Katja, which was incredibly difficult.

We endured a challenging period of uncertainty then, not fully understanding the challenge we were up against. It was a time of tender love and patience as we tried to make sense of what we were facing.

I clearly remember the Christmas before her second birthday… the way my kids looked still lingers in my mind. As I mentioned, we have a few German friends, who cannot go home for Christmas and we also have an open invitation for whoever wants to visit us for Christmas.

Oupa B was bringing his usual… being Father Christmas and the children were excited while waiting for their presents. Jana was lying on her back on a yoga mat on the floor and her parents, my amazing children, looked so heartbroken.

As I looked at them, my heart was breaking and tears were welling up and all I could do was to offer to make us tea just to escape into the kitchen.

When I returned with the tea, the words automaticly tumbled out of my mouth and the message was clear… that Jana was happy… it was us that were sad… she came to be her, and we just needed to accept it.

This was profound, also for me, as it was as if the words were spoken through me…

Acceptance was the key!

Jana has an incredible spirit!

Even with the challenges she faces, her positivity and ability to bring joy to others is truly special.

Click on the bracket next to photo for slideshow:

Jana’s 2nd birthday

From around this birthday, Jana began losing her ability to sit up on her own and her grip with her hands.

Diagnosis

It was terrible not to know what was causing this. Tests were done in 2021, in Germany, which included an MRI, blood tests as well as a lumbar puncture, where cerebrospinal fluid is drawn for testing.

Click on the bracket next to the photo for the slideshow:

The tests all returned normal – a normal looking brain, blood and no indications for what condition we were dealing with.

Later that year, back in South Africa, Jana was diagnosed with Rett Syndrome at the Red Cross Childrens hospital in Cape Town. The continuous clapping of her hands was the strongest indication.

Rett syndrome is an extremely rare genetic disorder that primarily affects girls and leads to severe cognitive and physical impairments. It’s caused by spontaneous mutations in the MECP2 gene and is not inherited. The mutated gene impairs brain development and function. While most children with Rett syndrome initially develop typically for the first 6 to 18 months of life, they then begin to lose previously acquired skills, such as the ability to walk, talk, and use their hands in purposeful ways.

Some common characteristics of Rett syndrome include:

1. Loss of motor skills – Children may lose the ability to perform simple movements or skills they had mastered, like grasping objects or walking.
2. Repetitive hand movements – These include wringing, clapping, or tapping hands, and can be a hallmark of the condition.
3. Speech and social regression – Many children lose the ability to speak and may become less responsive to social interaction.
4. Severe cognitive impairment – Intellectual disabilities are common, with most affected individuals having a significant delay in cognitive development.
5. Breathing abnormalities – People with Rett syndrome may experience irregular breathing patterns, including hyperventilation or holding their breath.
6. The severity can vary, but Rett syndrome is typically progressive, meaning that symptoms worsen over time. It’s a lifelong condition, and while there’s no cure, therapies (such as physical therapy, speech therapy, and medications) can help manage symptoms and improve quality of life.

Such a shock, but better to know what we were dealing with…

… obviously, there were, and still are those moments where we have to keep remembering that…

Jana is happy

Janas family

Luckily, our family as well as our extended family knows how to make light of a challenge. The saying ‘that it takes a village to raise a child’, most certainly applies to our magical Jana.

Our friend, Barry came to visit after Jana was diagnosed and interviewed and made a short documentary:

https://next.frame.io/share/66ca0aca-0fda-48b7-9be4-c48bd142e54f/view/8bb3be54-3654-4fde-a084-024b00f27ef6

We are ever thankful to Jana’s German family as they always rally around all her needs and help just where they can. They have organised special needs equipment numerous times, and made contributions to ensure Janas needs can be met. What a special family! (Read my blog post on the link for our amazing visit to Germany)

Katja’s Mom, Birgit, is beautiful and looks like she could have been her sister.

A slideshow with some of Jana’s lovely family in Germany…

As I mentioned earlier, Jana means: She knows… and she most definitely does as she chose her family well.

My gorgeous daughter, Maryna, blessed us with two amazing grandchildren, Alexia and Maddox. They dote over Jana.

Jana loves her Aunty Maryna… and it is wonderful to see how Maddox relates to Jana. He is just six months older than her. It is as if they communicate with their eyes. One day I came out of the pantry and they were looking at each other, smiling and nodding in such a fashion as if they were communicating… without words. I stood still and watched them for the longest while.

Last minute edit: 21 February 2025 – I am listening to The Telepathy tapes and I feel that I am starting to understand so much better and as I do sound cryptic, I am just going to leave a link:

https://www.youtube.com/results?search_query=the+telepathy+tapes

We also have Oupa Ernst on the farm who adores Jana. The only way Oupa Ernst sits, is when Jana is on his lap. Jana has superpowers.

Myself and Bethesda love spending time with Jana and we are superblessed when she visits us when we are not travelling for work.

Slideshow…

Janas village

As it takes a village, I have to mention, with so much gratitude, Jana’s non-blood-related grandparents, Adela and Brett, and their daughter Layla – Janas spirit godmother and closest friend of Juan and Katja. They have been involved in her life since birth, offering love and support, and she’s even had sleepovers with them.

From Layla on Jana’s 2nd birthday:

Thirty three months ago
you were just a little bloom, 
Stretching and preparing,
you stuck yourself to mamas womb.  

Carried in the body of a warrior,
strong wide hips to hold you in her sway 
We all felt your soul was close to touch
and you were here to stay. 

I remember holding mamas curved tum in hand
and listening to your life 
The love that past between their eyes,
such a woven husband and wife 

You came to greet us on a cloudy day,
your eyes a piercing blue 
I always felt when you looked at me
you knew all the things I knew 

The softest skin and lily white cheeks,
your papas little frown 
No one could quite get themselves to ever put you down 

A sense of calm melted off your being, 
You entered this bright lit world with a different way of seeing
 
Its been two years of learning, you’ve taken us all back to school 
You have taught us to take our fears and expectations and knit them together like wool 
To take the knitted squares and drop them in the flames 
To feel every emotion and put down any blames 

Your laughter comes in waves, sparkling like the sea 
Your dad dives to its depths and comes out buzzing like a bee 
Your tentative sounds, the call to make us hear 
We listen everyday, Jaans, to your chatter and your ‘mam-meer!’
 
I promise to pay attention, to your subtle precious words 
To try my best when you teach me to fly like the birds

Happy birthday to our precious Jana. Thank you for her parents for bringing her this far and for being the best example of brave, beautiful parenting, her guardians Si and Annie for always being by her side and for the sun that shines on her perfect face

Rett Syndrome

After Jana’s diagnosis, we discovered that there are other cases of Rett syndrome in South Africa, and my children are part of a support WhatsApp group with other parents. Knowing what we’re dealing with has made navigating this journey so much easier, and the support of Rett SA has been a strong pillar of help in our lives.

Jana visits the Rett clinics in Cape Town twice a year, which are organised by RettSA for which we are so grateful! At every clinic Jana is receiving Speech Therapy, Occupational Therapy, Physio Therapy, Nutritional Guidance and assessment from a Pediatric Neurologist.

The therapy is implemented by her parents and caregiver in Janas daily routine, so it is a big and constant learning curve for everyone around her. While Jana is non-verbal, she has a strong ability to communicate with her eyes. Jana can answer YES / NO questions and is learning low-tech AAC communication via cards. Through this, we understand that she is indeed understanding EVERYTHING that goes on around her. She can differentiate objects, knows a chair from a broom, knows her colours, is learning numbers and is likely to be able to read one day!

Jana is non-mobile, so physical therapy is just as important. OT and physio as well as massages are part of her daily schedule. And very importantly – lots of cuddles!

Angels

Angels in the human form get sent to us all the time. And so the first Jana angel came to us when Jana was two years old…

My Afrikaans book editor, Risha asked me if I knew of a volunteer position for her sister and it was the exact time that we required someone to look after Jana, while Katja, who is blessed to work from home was able to shift her focus to support the family financially.

We were superblessed with Yubi…

Yubi and Jana became best friends and she cared for Jana for two years. In her capacity as Jana’s caregiver, Yubi became an integral part of my children’s family and profoundly influenced their and all of our lives in an exceptionally positive way. Her deep love for Jana was palpable, and it radiated through every aspect of her caregiving.

(Social) Butterfly

Jana loves people, and everyone who meets her feels her unconditional love in the same way.

Jana’s 4th & 5th birthdays:

Jana is so well loved and I am superblessed with the lessons learned from her, especially around the topic of unconditional love.

From the very first time Jana looked directly at me, it felt as though she could see straight into my soul. Then she would smile ever so softly, and in that moment, it felt like everything in my world was perfectly right.

Everyone she meets, feels this way…

She embodies unconditional love!

Click on the bracket next to the photo for slideshow…

Even now, nearing her 6th birthday, Jana still smells like a baby. She is soft, calm and cuddly.

Jana, with her amazing personality, loves to laugh… just like her amazing parents.

Then came the exciting news… they were expecting a brother for Jana!

Meet Jana’s angel – KARREN

Last year, Jana was introduced to her new caregiver, Karren. Karren is a stunning lady with an angelic soul. She softly nurtures Jana with all her needs, and having her in their life is a game changer for my children.

I am superblessed with gratitude to have been able to write this as I feel privileged to introduce our precious soul, Jana…

Although I had to have the tissues handy while writing, it feels so much a part of my process of acceptance.

I am superblessed to know that Jana was happy when she came, and Jana is even happier now at the age of 5. She is ours and came to teach us so much. We love and adore her and are always ready to give her the best we can.

Jana’s brother, Lian Levi, entered our life journey on the 6th of January 2025.

Help us to build Janas caregiver a house

We have so many friends and connections all over the world who love us and with this post, I am also asking for help in building a tiny home for Karren who takes such amazing care of Jana.

Donations

Any donation, however small, would help thee caregiver building materialise.