Just as the moon lights up the world as darkness appears,
Luna has brightened our world in the darkest of times.
We found out we were pregnant with a little girl in May 2021. We were filled with excitement and it almost felt like a fairytale. Luna Rose van der Walt was born earthside on the evening of the 28th of December 2021 at 36 weeks old via an emergency c-section, the doctors told us shortly after her birth that she was not behaving as a 36-week old baby should. She was admitted into the NICU to support her feeding and we began navigating these initial challenges, alongside our medical team. Luna could not suck, nor coordinate swallow and breathe. A nasal gastric feeding tube was inserted to ensure she got the milk she needed. I had to do the one thing no mother wants to do, go home without my baby. It was very traumatic experience and something I do not wish on anyone. I sat with her everyday from morning to night for 31 days.
At the 2 week mark she had a scope that diagnosed her with Laryngomalacia, but that was not what the team deemed to be the root cause for her Hypotonia (Low muscle toned/“floppy”) We then ran a series of blood panels including a genetic test, and in the meantime started physio and speech therapy to begin supporting her as best we could.
On the 15th of February 2021 our lives stood still and was about to change forever. I heard the phone ring, with no idea how the next few minutes would shift our lives forever. I answered my phone and received news that no mother wants to hear, a call we were so anxious for and dreading. Our world came crumbling down and I just broke down on the kitchen floor. You can only be strong for so long and this was just the last I had to give at this point.
I answered the phone with a lump in my throat and when our paediatrician said ‘I am so sorry, Savannah, but her results are positive for Prader Willi Syndrome’
I just stood there frozen and in shock, how was this possible, how was this fair, a little girl whose life has barely begun and already was so challenging has now been multiplied by a label unknown to many.
The most crucial intervention, for Luna, is Growth Hormone Therapy (GHT) which is going to give her the best chance at fighting this, she is such a fighter and her determination as small as she is, is inspiring. Unfortunately, in South Africa, GHT is not funded by the Government and our medical aid does not pay for this treatment either so we are continously fighting a loosing battle.Above the GHT treatment, Luna needs to be with a physio regularly, speech therapist and endocrinologist to begin with, and then as she develops further she will need other specialists to intervene.
In the beginning, we as a family struggled to come to terms with the fact that we cannot change Luna's diagnosis, we kept asking God"Why?", "Why us?", "Why our beautiful little girl?"
But we started asking these questions again with a different perspective. "Okay this is now our lives, so why God, why do you want us to walk this journey, what is the purpose, what do you need us to do? From that moment onwards we started realising that there is a bigger plan and purpose for our lives and especially Luna's life. We started advocating and fighting for her and all her needs.
Grief never leaves you but you learn to adapt and with each phase of the grief you become stronger as a person and more determined to give your child everything they deserve.
Her physiotherapy has become more important for the current phase she is in due to the delay in crawling and walking. Luna started Occupational Therapy in June to start working on fine and gross motor skills. Her speech therapy has continued from birth and has shifted from helping her feed to starting solids to now learning how to start communicating. Luna sees a panel of specialists regularly due to the complex spectrum she is on, and an endocrinologist who plays a vital role in the syndrome she has.
Luna has accomplished so much in her one year of life, she has surprised her medical team and continues to move mountains and prove that she is a miracle, she can and she will be the best version of herself, and we are here for that all.
Our lives will never be the same again but maybe that was always the plan for our family and our lives. This journey has taught us so much and continues to teach us everyday what really matters in life. We will always be there to support and love her with all we have while fighting for what is right while trying to give her the most normal life we possibly can.
Our goal is to continue to spread hope and inspire others that might be on the same journey or slightly different but still struggling.
The best it yet to come, I promise!