Daniël le Roux's Story

Daniël was born on 01 February 2010, a bundle of joy weighing in at 2,6kg. He was often sick and in hospital. In May 2012 we realised that he couldn’t see so well, and he developed a squint. He couldn’t walk properly anymore and was very jittery. We took him to the doctor, and a MRI scan was done. He was diagnosed with Leigh's syndrome, for which there is no cure and a poor prognosis.

We were grief stricken. Our little boy was terminal, and there was nothing we could do. He was such a lovely child with the most spontaneous personality, who gave his love to everyone.

The next few months were a rollercoaster ride. He perspired a lot, got tired easily and his apnoea monitor went off at night when his breathing was too shallow.

In September 2012 Daniël suddenly stopped breathing. He was resuscitated and put on a ventilator. A week later a tracheostomy was done to make him more comfortable and assist with his breathing, as he was still permanently connected to a ventilator. After the tracheostomy was done, he was awake for the first time in a week. He knew we were with him, and he smiled. But the doctors prepared us for the worst and emphasised that there was no hope. We could not and did not want to accept it and he was transferred to a hospital closer to our home. There one doctor, Professor Pieter Fourie, gave us hope. He was that someone that we were looking for, that someone that was willing to fight with us for Daniël’s life. He said that he still believed in miracles. We immediately knew we were in the right place. Here were people that would listen to us and help us fight for our child’s life.

The doctor heard about a new “wonder” drug from America that was being developed and tested on children, specifically for children with Leigh's syndrome. The company approved the use of EPI 743 on compassionate grounds and Daniël was started on it immediately. Slowly but surely he started getting better and we were overjoyed. There were lots of setbacks as well, infections with multi-resistant organisms, an emergency operation on Christmas Eve that nearly cost him his life, but Daniël kept on fighting, with a smile on his face– a smile that lit up the whole room. He was a true champion. We tried stimulating him every day. I think he was the first two-year-old to ever paint in ICU, and have a swimming pool in his room.

Things were going better with Daniël, although still dependent on a ventilator. He was discharged home after 169 days in hospital, and was being cared for at home. Like someone said to me one day: “ Everybody prays for a miracle. But not everyone is lucky enough to experience one.” And Daniël fought against all the odds. He taught us that life is to short, to make the most of every day. We went out as often as we could. We played and messed around. We wanted to live our lives to the fullest. As time went by, he got stronger and stronger. He was able to breath on his own for 6-8 hours during the day before we had to put him back on the ventilator. He got cleverer with each passing day. He knew how to take himself of the ventilator when he wanted attention. And put the ventilator back on again. He held his own feeding tube with feeds. He was crazy about anything with buttons or lights, like any boy his age.

His follow up scan after three months on the EPI 743 showed no progression in his disease, and that some of the lesions had shrunk in size. We were happy and had a new normal. He had his bad days, and was in hospitalized a few times, but things were looking positive.

On 22 August 2013 he fell ill with bronchitis and was admitted to hospital for treatment. That night he only wanted to talk and watch his Lollos. The next morning on, 23 August 2013, his heart stopped beating and he passed away. We got to hold him for the last time and our hearts broke when we had to let him go.

There are no words to describe what we felt, and what we are still feeling. You are not supposed to say goodbye to your child. It is supposed to be the other way around. Your child is your future, your dreams. And then suddenly it is gone.

I only realised at his funeral how many lives he has touched. As my brother commented: “Today a church full of people said goodbye to little Daniël, a three-and-a-half-year-old little boy. It makes you think how much difference you make in people’s lives, and how many people will be at your funeral one day. RIP little Daniël. An absolute inspiration to everyone. “

I know Daniël is with me, in my heart and next to me in everything I do. I still sing to him, his arms lifted, a smile on his face. I know his body is healed, but I miss him more than anyone would ever know. I had to accept that my plans for my life were not God's plan. And that there is a bigger purpose in everything that happens.

And that is how the Daniel and Friends Fund came into being. Life doesn't always work out like one has planned, but through the inspiration of our children's lives, it could be even better than we ever imagined or dreamed of. Our dream is to form a stronger, more intimate special needs community.

“if there is one thing I have learned in life; it is to fight. Fight for what is right. Fight for what you believe in, what is important to you. But most importantly, fight for the one you love and never forget to tell anyone how much they mean to you while you are still alive.” – Unknown.

A year after he passed away, we were blessed with little Nina and recently with little Nico. Both of them vibrant rays of sunshine, rainbows after the storm. We tell them about their brother every day and the impact he has made on our lives.

Do You have Question? 
+27 76 331 8474

P.O.Box 4725, Tygervalley, 7536

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