Daniel and Friends Fund

Daniel and Friends Fund
The Daniel and Friends Fund...creating the platform for a stronger, more intimate special needs community

What is the Daniel and Friends Fund?

On the 23rd August 2013 little Daniel le Roux lost his lengthy and courageous battle with Leigh Syndrome, exactly one week after another little warrior, Mariele Laurie, succumbed to complications of the syndrome she suffered from, Aicardi-Goutieres Syndrome. Professor Pieter Fourie, whose care of and love for Daniel and Mariele had gone over and beyond anything which might be considered fair professional expectation, was determined not to allow the heartache and devastation caused by such tragedy to go without lending itself to a higher purpose...and so shortly after Mariele and Daniel had earned their angel wings, Professor Fourie shared with Kate and Lianie, their mothers, his vision for an organisation which would provide much-needed support for other parents who might be on a similar journey. Just a few short months later, the Daniel and Friends Fund was born guided by, by this time, three special needs mothers, each symbolic of the three friends who had helped Daniel in the Biblical passage from which Professor Fourie had drawn his inspiration.

Since their launch in February 2014, the Daniel and Friends Fund (a registered non-profit organisation) and the dedicated and driven people behind it, have provided not only the emotional and psychological support often sought by parents of children with special needs, but have also committed to ensuring that these parents have had access to the necessary knowledge and training in order to equip them to care for their children in the best possible way that they can. While largely focusing on top priority issues like providing extremely affordable CPR courses, free therapy sessions, psychology-based programs for the parents, occasional donations of items/equipment necessary for caring for a child with special needs...the importance of also creating a fundamental base from which friendships and 'normalcy' can stem has not gone overlooked. To this end, the Daniel and Friends Fund mommies are often treated on special days like Mother's Day and Women's Day and, where possible, these invitations are extended to the entire family for celebrations such as Mandela Day, Christmas Day, etc.

The purpose of our blog is not only to provide the opportunity for sponsors, supporters and followers to stay in touch with the various projects and events we're busy with but also, and just as importantly, to provide an insight for others into what life entails for families on a special needs journey, as well as enlightening fellow parents to the fact that this journey need not be travelled alone...

Saturday, March 26, 2016

Victor Goosen...a story of hope and courage

Eight-year old Victor Goosen, from Ubbena in the Netherlands, had to come all the way to Cape Town for a chance to survive…and this thanks to the intervention of a well-known and much-loved paediatrician, Professor Pieter Fourie. 

Victor and his parents, Alida and Martin, flew back to Netherlands on Sunday the 13th March after the successful medical care and treatment they received at Cape Gate Mediclinic.  Victor, who is diagnosed with multiple neurological disabilities, was denied a life-saving Tracheotomy by two major academic hospitals in the Netherlands, apparently because of his severe disabilities.  With euthanasia being legal in Netherlands it was implied by medical staff that it would be in Victor's best interest to simply make him comfortable and let him pass away, even though this is something Victor’s parents would never have considered.  Alida shares that the medical team’s argument for not granting Victor the much-needed Tracheotomy just did not make sense and they gave the Goosens the impression that they were not being entirely honest with them and felt that just making Victor comfortable would be enough.  Victor is in a wheelchair and although he cannot move his arms and legs, he could always breathe on his own.  On the 22nd November 2015 Alida and Martin had to rush Victor to hospital with a 39˚C temperature.  He was in distress, was blue around the mouth and kept having apnoea episodes.  Nothing helped ease Victor’s condition and after several tests and examinations doctors could not find the cause of Victor’s ailments.  An MRI scan showed that Victor’s brain had shrunk, indicating regression in Victor’s condition.  Victor’s breathing deteriorated so severely that doctors said they did not know how much longer his body would cope.  On the 6th December 2015 Victor was transferred to the Intensive Care Unit where he was sedated and placed on a ventilator.  It was later established that Victor’s tongue muscles had collapsed and were creating pressure on his vocal chords, creating an airway obstruction.  As a result of this, Victor could not breathe on his own and the oxygen-deprivation was resulting in anxiety and dystonia attacks.  Alida and Martin, dedicated themselves to extensive research and realised that a Tracheotomy was Victor’s only chance of survival but when they approached Victor’s doctors with their information, were met with heart-wrenching resistance and opposition, even being told by one doctor that a Tracheotomy for a disabled child was not an option and the only thing they would achieve by pursuing the Tracheotomy would be further deterioration.  The medical team advised Alida and Martin that they would continue treating Victor’s dystonia with medication while he was still connected to life-support but that their decision regarding the Tracheotomy was not negotiable.  Out of desperation the Goosens travelled to Germany to look for support and found it at a hospital in Essen who agreed to do the surgery.  However, shortly thereafter Essen received notification from the hospital in the Netherlands that should the medical team in Essen go ahead with the surgery, the hospital in Netherlands would not be prepared to offer Victor any further medical care, particularly not post-operative.  Alida and Martin were devastated.  Their child’s life hung by a thread and they were powerless to help him. 

On the 28th of December 2015 Alida received a MESSAGE OF HOPE by way of an sms from Professor Fourie.  She recalls with tears in her eyes that it is a message she will never forget.  In the sms Pieter told Alida that he was coming to fetch Victor…that he would pay for the airfare himself and that he would ventilate Victor by hand for the twelve-hour flight.  Those who know Pieter Fourie’s dedication and passion for his patients, know that this was no light-hearted gesture from Pieter.  He would...and could...do just that. 

Alida grew up in Bellville, Cape Town where she met her husband, Martin, while he was visiting South Africa.  After they’d married the Goosens moved to the Netherlands.  When Victor was a baby, Alida met Professor Fourie when she visited family in 2008 and was concerned about Victor’s failure to thrive.  Professor Fourie was convinced that Victor had an underlying syndrome put could not quite settle on a diagnosis, something no-one has yet been able to do.  Amongst other conditions, Victor has microcephaly and at eight year’s old his development is assessed on par with that of a nine-month old baby.  Victor, however, understands everything that is going on around him and is extremely sensitive to his environment. 

Pieter Fourie’s sms on that glorious day was the first gesture of hope for Alida and Martin…they felt strengthened by the fact that there was at least one doctor who was prepared to stand up with them and fight for their child’s life.    

After the airline refused to allow an oxygen-dependant traveller on board, the Goosens were faced with yet another obstacle.  With an air ambulance costing a daunting one million rand, the Goosens sent out a plea for help and were astounded by the reaction from friends and family who raised the amount within an extremely short period of time and on the 4th January 2016 Victor landed at Cape Town International Airport and was personally met by Professor Fourie.  Victor was transported to Cape Gate Mediclinic where his treatment began immediately. 

Alida and Martin were shocked when Professor  Fourie advised them that Victor’s bloodstream indicated a severe overdose of sedatives, which had been given to him in the Netherlands while connected to the ventilator.  On the 10th January 2016 Victor underwent life-saving surgery to place the Tracheotomy.  The operation was successful and Victor’s parents were amazed at how quickly he recuperated.  Victor could breathe on his own once again, the anxiety/apnoea attacks had disappeared and it was not long before Victor was laughing and communicating again.  “Professor Fourie proved everyone wrong and my child is alive today.  There are no words which could do justice to how grateful I am to him!” – Alida.  Lianie le Roux, a registered nurse who works for Professor Fourie gave Alida comprehensive instruction on how to change Victor’s trachea on a daily basis.

Professor Fourie shares that in such complicated instances, medical knowledge and experience are second to crisis management and obtaining a consensus which is in the best interest of the child.  “You, as a doctor, are on the same path of discovery as your patient and their parents and there are many daunting challenges to be confronted.  The success of such cases depends on how close you allow yourself to become to the situation and how well you listen.  You keep yourself as close to the heartbeat of the matter as you can.  And you listen…without laying your own opinions on the table…and then you listen again, until you have reached the point where a consensual decision has been made that you are 100% certain of.  And only then do you give your instruction…and pray…until the next crisis”.
Lianie, Alida, Victor, Sam and I