"Steemit Engagement Challenge S9-W3: "Kindness that changed my life"

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So often, things in life change who we are.

It gives me no greater pleasure than to share an act of kindness that changed my life. I want you to meet Nadia.

Nadia, a teenager like so many other teenagers, funny, naughty, ambitious, and awaiting entering adulthood with great eagerness.

But there is a difference. Nadia was no ordinary child. She was diagnosed at a young age with KSS (Kearns Sayres Syndrome) which is a very rare neuromuscular disorder. A syndrome where an early death cannot be avoided.
To our knowledge, she was the only child in South Africa with this syndrome. We always told her that not only was she unique, but she was also special.

Growing up she was too small to realize what was happening to her body. It was only in her later years that she could understand the changes. Her muscles weakened, her stature was short, she had impaired cognitive functions, and she got extremely tired very quickly.

It was also then that she got to know about her disease on the Internet and the reality that she would never be able to get married and have children, the dream of any woman. She will not be able to live a normal life like you and me something we so often take for granted, and she will have to depend on others for help.

I share a piece with you that she wrote for me;

”Make no mistake, I still cry. I cry when it hurts, I cry when I need to go to the bathroom and I cry when I see the look on my family and friends' faces. BUT, the difference is that I now know what I have to fight for and that I am not alone.

There might currently be no effective way to treat KSS but I know that people are 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 the years to come. .”

In Hebrews, we read that hope is "an anchor of the soul". I have placed my hope in the hands of our Heavenly Father and I am living my dream to share this hope with others in South Africa wherever I go, function after function, speech after speech!

And that is when acts of kindness changed my life forever.

The name "Nadia" means HOPE. Although she had high hopes for herself, she spread the KSS word wherever she went. I watched her many times sitting in her wheelchair on stage with her broken body giving messages of hope.

She never thought of herself, only of others. I often forgot that she was a teenager.

Over the years her parents, my sister-in-law, did whatever they could to help their daughter. They took her from specialist to specialist. They got one of the universities to formulate and produce a special medicine for her.

Her medicine costs them a fortune every month. There was no stone left unturned to help their daughter.

We got to hear about a doctor who could help her with a stem cell transplant here in South Africa. Will it work? He could not tell us, but all that we know is that we had to give it a try.
The treatment was very expensive and the family could not do it on their own.

I did a lot of research on KSS and in the process, I got to learn so much about it. I got to know wonderful doctors, parents, and patients from all over the world who were in the same situation. I even discovered that there was another girl in South Africa, Natashia, who was also in her teenage years.

This was also how I got to hear about a KSS conference happening in America. There was no option; a plan had to be made for my sister-in-law to attend.

What a beautiful problem we were sitting with, funding. On the one hand, I had a stem cell transplant, and on the other hand, a trip to America.

I started a Facebook page for Nadia and with that a "Hope with Nadia 5 x R50 challenge". I started the challenge by donating R50 (+/- 13 STEEM) and I challenged 5 other people to do the same.
At the same time, I launched a crowd-funding project.

I cannot help but cry just thinking about it. The donations streamed in from all over the world. Messages, photos… it was just unbelievable. I was totally stunned. Within a couple of weeks, we had enough for Nadia to start the treatment and for Mommy to go to the conference. Best of all, it was at a time when Nadia was not well and in the hospital. We could show her all the photos and read the messages to her.

Unfortunately, the stem cell transplant did not help, and slowly, her situation got worse. My sister-in-law went to America on her own as Nadia was too weak to go with her.

She learned so much from this conference not only from the various specialists but also from other parents. She returned with the message that there was nothing they could do for Nadia. All that remains is to make sure that she is comfortable and bestow her with ample love.

Through these campaigns, Nadia’s story spread like wildfire. We had an organization donate a new wheelchair, and the "Reach for a Dream Foundation" in South Africa arranged a ball for her and her school friends, knowing that she would never be able to attend a school ball.
I even got company manufacturing beds to donate a new special bed for her and a new mattress for Natashia’s bed.

The acts of kindness we received from doctors, hospital staff, family, friends, and hundreds of people who were not known to us were just unbelievable. It made me feel so small as a human being, and it changed my life forever, for the better.

There is so much good in all of us we just need to open our eyes and look for it.

Sadly, on Valentine’s Day, 14 February 2020, it was time to let go. Permission was given to switch off the machines that kept her alive for the last two weeks.

I count myself so lucky as I was the last one sitting by her in the hospital waiting for her mom to arrive before she went into a coma. I often think about what she was trying to tell me before she closed her eyes.

Nadia’s place will never be filled. It left an empty place not only in my heart but in the hearts of thousands of others.

I sat for hours with her in the hospital. We planned to write a book. The day that she went into a coma I actually purchased a journal and start making notes of the whats and the hows while I was sitting with her. I share two pages of the journal with you.

As for the contest, I think I’ve addressed what acts of kindness impacted my life, the emotions I felt not only then but still today.

What lessons did I learn and did it change my perspective about kindness and the way I have to treat others?

I have learned so much from Nadia, a beautiful girl and a deep child of God.
How can I not after these words of hers;

"We have every reason to grab God’s promise with both hands. I don’t know about you, but I am not letting go!"

I have learned so much from all those who were part of this act of kindness. So often, it is the smallest of words that can make the biggest impact.

I have learned never to turn my back on people. You don’t know the impact your smallest donation can make.

I have learned that in God’s eyes, we are equal, and He has a place prepared for all of us.

I have learned to make the most of every moment, and if you can do it for others, JUST DO IT!

I have learned that you can never tell your loved ones enough how much you love them.

I have learned to make time for my family and those who are precious to me.

Did I manage to pass it forward by showing kindness to others?

Indeed, I did. I found myself doing good for others all the time. So often I don’t even find them, they find me.

When my sister-in-law returned to South Africa and Nadia had her ball. A ball that was not only her “matric farewell” but also her “wedding”.

I decided that I wanted to say thank you to those who played a vital role in her life. I planned a Sunday lunch, got sponsors, and hosted a Thanksgiving event.

Nearly 200 people were part of it. It was also Nadia’s last public event.

It was so good to be able to say thank you and it felt darn good wiping the tears from her face after her few words;

”Alistair MacLeod once said; “No one has ever said that life is to be easy. Only that it is to be lived.”

And now I can't help thinking about how hard life really is. These days, if you go for a job interview you are asked what shift you want to work, pitch dark, pitch dark or night dark.

The last year was not easy for me and my family with me being in hospital for most of the time. So often I felt helpless and discourage. I have prayed more than ever before.

Today, I want to thank my Heavenly Father for his incredible love and grace that carries me through my illness and the dark times in my life. Without him, I wouldn't be sitting here in front of you today.

I am so grateful for all of you being there for not only me but also for my family. I am grateful for friends, prayer chains, messages, phone calls, cards, visits, flowers, treats, eats, encouragement and ALL THE LOVE you all have for me.

On his journey from Galilee to Jerusalem, Jesus healed ten lepers. Despite their miraculous cure of this incurable and highly contagious disease, nine forget to say thank you. Only one, a Samaritan, comes back to say thank you.
I am not a Samaritan, no, I am Nadia who wants to turn around 10 times today to say thank you to my family, my father, my mother and my brother. Thank you for what you do not only for me but also what you mean to me.

No pot of gold at the end of a rainbow can be measured against my love for you.

Today I can truly look back and say, “Due to all of you I am living my life!".

Thank you!!

Nadia

Acts of kindness... 3 little words that can change us forever!

I invite:
@liasteem
@kouba01
@inspiracion

*All images are my own

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