One of Nadia’s dreams has always been to dress up for an occasion like a Matric Farewell but being stuck in a hospital meant that the young South African might never get the opportunity… that was until her Doctor heard about her dream, and decided to make it a reality!
Johannesburg, South Africa – Nadia Du Plooy is a young South African who was diagnosed at a very young age with Kearns Sayres Syndrome – a rare neuromuscular and slowly progressive disorder – that has kept her hospitalised for the last few months.
“Kearns-Sayre syndrome (KSS) is a rare neuromuscular disorder. An important clinical symptomatic feature is the presence of a mono-or bilateral ptosis (partial closure of the eyelids). This disease is mostly characterized by three primary findings: progressive paralysis of certain eye muscles (chronic progressive external ophthalmoplegia [CPEO]); abnormal accumulation of colored (pigmented) material on the nerve-rich membrane lining the eyes (atypical retinitis pigmentosa), leading to chronic inflammation, progressive degeneration, and wearing-away of certain eye structures (pigmentary degeneration of the retina); and heart disease (cardiomyopathy) such as heart block. Other findings may include muscle weakness, short stature, hearing loss, and/or the loss of ability to coordinate voluntary movements (ataxia) due to problems affecting a part of the brain (cerebellum). In some cases, KSS may be associated with other disorders and/or conditions.”
As far as South Africa’s records show, Nadia is the only person in the country fighting this rare disease.
“I’m no longer a child. I’m now a young lady. My one half is glad about this but my other half is sadden by this. When I was diagnosed eleven years ago I was too small to realize what was happening to my body, and it was so easy to cry when things got too much for me.
Today I’m older and wiser with the Internet at my fingertips.
I now know what KSS is all about; that I may never live a normal life again. That I may have to always depend on others to do things for me, which are so often taken for granted, for the rest of my life and that I may not live pass the age of 20.”
One of Nadia’s dreams has always been to dress up for an occasion like a Matric Farewell but being stuck in a hospital for the past few months meant that the young South African might never get the opportunity.
That was until her Doctor heard about her dream, and decided to call on all her friends and family to make it a reality!
Together, with the help of all her friends and family, Dr Ally helped arranged a beautiful night out that Nadia would remember forever! Fireroom in Monte Casino gladly gave up their venue to host the special evening, and everyone involved went the extra mile to make her feel special and loved!
Ambulances were sponsored to get her there, make-up, hair styling and a gorgeous dress were arranged to make her feel like a real princess, and a strapping young man from the rowing team was honoured to be her date.
Watch their first dance below:
Nadia loved the evening and is so thankful for all her family, friends and sponsors who helped make her dream a reality, BUT her journey is not over yet, and the young South African is ready to keep fighting, for herself and others. This is her fight song!
“Make no mistake, I still cry. I cry when it hurts, I cry when I need to go the bathroom and I cry when I see the look on my family and friend’s faces. BUT, the difference is that I now know what I have to fight and I now know that I am not alone.
There might currently be no effective way to treat KSS but I know that there are people working around the clock to find it. Nothing will give me more pleasure if I can play a small role in finding it. I am offering my body for testing so that not only I but others can be cured in years to come.”
Sharyn O’Neill, one of the organisers of the day sent out a special thank you to everyone who helped make her dream come true:
Debbie Le Roux Cutting Room thank you for allowing us to use Salon to start the beginning of her special day, Monica Sorbet Lonehill for nails & feet, Bernice Ferreira Simply Blushed for makeup, John Antoine Van Deventer JvD Photography for capturing the star of the day. Shaun James films for the video, The Reach For A Dream Foundation for the dress & accessories, Brent Lindeque for being the special human you are giving us good vibes and helping us find the perfect venue! Fire Room Monte Casino thank you for the most beautiful venue and helping set the atmosphere for a special ” matric dance ” your staff so willing to help and making each step of the way an easy and special day, great food and good memories.
To my special friends Marjike Arran, Christine Muller, Nikita Friedman, Bernice Ferreira, Mehnaaz Akbar, Dr Ally thank you for taking time out of your day being supportive, wiping tears and giving your love. Christian and Thabang Mthombeni thank you for playing the strings of all our hearts.
To follow Nadia’s journey or get more information, click here.
by 