Daniel and friends… the beginning of a miracle
I would like to start by introducing you to Daniël. 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 he was diagnosed with Leigh’s syndrome, for which there is no cure, and a poor prognosis.
How it all began
In September 2012 Daniël suddenly stopped breathing. He was resuscitated and put on a ventilator. 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 gave us hope. He was that someone that we were looking for, someone that did not give up and was willing to fight with us for Daniel’s life.
The doctor heard about a new “wonder” drug from America that was being developed and tested on children, specifically for 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, 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.
A brave, little disciple of Jesus.
Things were going better and Daniël, although still dependent on a ventilator, was being cared for at home. On 22 August 2013 he fell ill again with bronchitis and was admitted to hospital for treatment. The next morning his heart suddenly stopped beating and Daniël passed away. We got to hold him for the last time and our hearts broke when we had to let him go.
Our hearts are still aching, and we all miss him terribly. He was a true miracle that kept on fighting till the end. 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.
Daniel and Friends Fund
And that is how the Daniel and Friends Fund came into being. An initiative begun by his doctor that took care of him with such love and compassion. It is registered as a non-profit organization.
- In the book, Daniel, the Bible talks about Daniel and his three friends that helped and supported him. And just as Daniel in the Bible, we are three mothers involved in the organisation.
Our vision is to support disabled children, together with their parents and/or caregivers. We want to equip the parents with the necessary skills to be able to take care of their children, and educate and raise awareness in the public.
- As a parent of a ‘disabled ‘ child, I realized how big the need is. There is very little support, and you feel alone and isolated. You sometimes just want to talk to someone that is in the same situation that you are. Your family and friends go on with their ‘ normal’ lives and it feels like you are being left behind. Because no one that is not in that situation can understand what it really is about. The feeling of being utterly alone, the thousand emotions in one day… the fear of literally holding your child’s life in your hands.
- It is so easy to forget that there is a person in a disabled body. A person/child with feelings. A disabled child cannot talk for themselves. You as a parent must be their voice. But to be able to do that, you have to be strong and have the necessary support and knowledge.
Since Daniel was diagnosed, we said that if we are only able to help one child or parent, then Daniel’s life meant something. Then he didn’t live, suffer and die in vain.
The Daniel and Friends Fund directors include Lianie le Roux, Kate Laurie and Nicky de Beer. Our Board members include Prof Pieter Fourie, Nico Walters, Anna-Mart Muller, Rose-Hannah Brown and Dr Garish Mohlaba.
Professor Pieter Fourie is a paediatrician that expertly takes care of our children. Nicky has a son, Sam, that suffers from Rubinstein-Taubi syndrome, Cerebral Palsy and Autism. Kate has two disabled children, Marielé and Liza. They both suffer from Aicardi-Goutieres syndrome. Marielé died exactly one week before Daniel, also due to complications of her syndrome.
Together we are going to reach new heights whereby many other children with disabilities similar to ours will be helped. It is our dream, our calling and our passion.
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.