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Dressed in colourful garb to celebrate life, the Daniel and Friends Fund held a birthday fiesta in Durbanville on Saturday evening to mark the organisation’s 10th anniversary.
In a span of a decade the non-profit organisation has established a flourishing community of parents and other role players involved in the care of children with special needs, be it rare disease or disability.
The occasion was attended by the mothers of special needs children, ambassadors and sponsors.
“This day is fantastic, but also sad, but a good type of sad because it gives remembrance to our children who lost the battle. Their names live on in the work of the organisation,” says Lianie le Roux, mother of Daniel who passed away in August 2013 of complications of Leigh’s Disease.
The organisation was founded in January 2014 with five members. Today more than 200 members are involved. It provides a platform for special needs families and support be it emotional, physical or by other means where possible.
To Lianie Daniel and Friends Fund is a matter of the heart.
“We are grateful for the journey they have walked alongside the other moms. We have learned a lot over the ten years and though we have made many mistakes, the organisation has become more like a family.
Co-directer Kate Laurie says the platform has enabled the parents of the children to form friendship circles to support and help one another.
“In essence it is about the involvement of the parents with the organisation and one another. They all have something in common and form close friendships. Everyone who becomes involved with the organisation, stays,” says Kate whose daughters Marielé and Liza succumbed to rare childhood disease, Aicardi-Goutieres Syndrome.
Joy and purpose
Co-director Michelle Phillips for whom this work is a passion, says the organisation has filled her cup. “It brings me joy and purpose and has become part and parcel of my life,” she says.
This sentiment is shared by the mothers.
Tamara Yates Butler is mother to twins, one of whom has cerebral palsy and the other partially blind and autistic. She says it is amazing to be part of Daniel and Friends.
“I don’t know what I would do without the them. They have been such a help to me, via the network, especially when it comes to nappies for the children. It’s comforting to know other moms are going through the same thing you are. We do what we can,” she says.
Marilyn Conradie lost her two elder children in the same month due to a rare condition and her youngest son is autistic.
“Financially we really battle, to pay for things like speech and occupational therapy and medication for autistic children is not paid for by medical aid. It is hard.”
Throughout the year the organisation presents funded family days, where parents and children can come together to have fun. Their highlight is in June with the popular fashion show, followed by other day outings for the children, a Nappie Walk later in the year and their annual gala event.
Although they don’t have all the answers, says Kate, they have the resources available to help find the answers.
“From the start our aim was to support each other and to learn from each other, and I think we have accomplished that.”
