On the 23rd August 2013, little Daniël le Roux succumbed to complications of Leigh Syndrome, a rare disorder he’d battled so courageously. Daniël’s paediatrician, who had cared for him with much love and compassion, envisioned an initiative through which families of children with special needs can be provided with the necessary support and resources to see them through similar challenges.
And so, in remembrance of Daniël, the Daniël and Friends Fund was launched, carried by a shared dream and passion to motivate our fellow parents to draw inspiration from their children and each other and possibly achieve a higher joy they might never have imagined, despite their life’s path having taken an unexpected turn.
To be the advocate for children with special needs.
- To provide parents/caregivers with the necessary training, knowledge and understanding to enable them to care for their child/children to the best of their abilities.
- To raise awareness for these children and their families.
- To change society’s perception of disability via media campaigns and community-based programs.
WHO ARE WE?
The Daniël and Friends Fund is a Non-Profit Organisation which provides the following elements of support to families of children with special needs :
- Parental Support
By means of a 24Hr Online Support Group, Education through various information/training sessions and family-inclusive social activities, as well as guidance on more serious matters provided by a Psychologist/Social Worker.
- Children’s Welfare
Through subsidised intervention therapy, sponsorships for day-to-day needs as well as equipment/accessories.
- Emotional Wellness
In-hospital visits to lift the spirits of the children during hospital stays.
DANIËL’S KIDS CLUB
A fun reward system which applies to both affected children, as well as their siblings (to ensure a feeling of equal importance and belonging) whereby children receive stickers for each function they attend and can then exchange their stickers for gifts once the required number of stickers has been collected.
THE ORGANISATION IS DRIVEN BY DIRECTORS :
Kate Laurie (Chairperson) whose daughter, Marielé, passed away exactly one week before Daniël and whose youngest daughter, Liza, suffers with the same condition as Marielé, Aicardi-Goutieres Syndrome ;
Lianie le Roux (Social and Finances) Mom to Daniël and Nina ; and
Nicky de Beer (Marketing) Mom to Samuel, who has Rubinstein-Taybi Syndrome, Cerebral Palsy and Autism
Professor Pieter Fourie (CEO)
Mrs Rose-Hannah Brown (Board Chairperson)
Mrs Anna-Mart Muller
Mr Nico Walters
Dr Garish Mohlaba