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...

Thursday, December 24, 2015

Painting It Forward 2015

In 2014, 32 year old Chris Lategan, an art director and movie props master, came face-to-face with one of the fears many of us dread...cancer. Diagnosed with a rare brain tumour which left him blind, Chris was admitted to Tygerberg Hospital for surgery. Despite being thrilled to have his sight back after a successful operation, one of the things Chris' visually-trained eyes first took in was the dreary state of the hospital's walls, particularly in the paediatric ward he occasionally passed.
Filled with an overwhelming sense of gratitude for the positive outcome of his treatment, Chris envisioned an initiative whereby he could pay it forward (a sentiment originally offered by Dr Burke - the anaesthetist who oversaw Chris' care in theatre), in the most creative way he knew how...art. And so, barely back on his feet, Chris shared on Facebook his idea of adding some much-needed colour and character to the walls of Tygerberg Hospital's paediatric ward. Friends, volunteers and sponsors immediately jumped on board, as did the Daniel and Friends Fund, and so followed the very first Painting It Forward project.
Eager to make the project an annual event, the Painting It Forward team got together again in August this year to debate its next possible project and after much deliberation settled on the Tygerberg Hospital School. Tygerberg Hospital School not only ensures that all children undergoing treatment, regardless of the duration, are able to stay up to date with their school work, but also provides specialised classes for children who struggle with Apraxia. A meeting with Tygerberg Hospital School's principal, Susan Potgieter, and a quick tour of the school left us not only in awe of how efficiently the school is managed with such limited resources, but with a very clear idea of which area would most benefit from the Painting It Forward project...the school entrance, which did little justice to the remarkable efforts being made within the heart of the school.
Once again the generosity from sponsors, volunteers and artists alike was overwhelming and a truly heartwarming process to be a part of. With the outstanding donations and sponsorships from Quality Paint Supplies, Franco Frazzita, Premier Scaffolding, AFS Productions, PEG Design and Oh So Pretty Event Planning, the incredible talent and commitment of the artists who painted the murals and the willingness and dedication of the volunteers to take care of the 'ground work', it was a project deemed for awesomeness. The excitement and pure delight captured on the childrens' faces when seeing the murals for the first time was the final affirmation of what a rewarding experience it had been.
The "before" picture
The walls needed to be scraped, sanded, washed
and then painted with a base coat before the artists
could begin their murals.
Harmonious chaos as everyone gets stuck in
And finally the walls are prepped for the artists to begin
 The artists painted a base graphic and volunteers
jumped in to "colour in" while the artists 
concentrated on perfecting the intricate details
Susan Potgieter, principal of the Tygerberg
Hospital School, adds her artistic contribution


Jodique Fortune's space turtle

Ludolph Pretorius' uniquely styled mural of Red Riding Hood
(completed on the Monday)

Chris Venter worked till 4am on the Monday morning to complete
his amazing mural of Karla Krullebol. Visit
Chris Venter Illustration to view more of Chris' talented work

Dorette Walters also pushed through till 4am to complete her
beautiful Aladdin mural

Hardus Jonker's larger-than-life mural One Piece

Maxine Koen's underwater delight - Dory and Nemo

Shoana Jones and Jason Fortune effortlessly put
a man in space

Taygen Hendrikz  beee-utifully painted work

Elouise Milburn's magical unicorn

Renier van der Vyver strikes a pose with his SpongeBob
Olivia Stone's breath-taking mural of How To Train Your Dragon,
which took three straight days to complete

Sandie Gie's awesome mural of Inside Out
Without these fabulous organisations and their generous donations
and support, the Painting It Forward project would not have
been the roaring success it was - we humbly thank you :
Quality Paint Supplies
Franco Frazzita
Premier Scaffolding
AFS Productions
PEG Design
Oh So Pretty Event Planning
Vanessa and Marko Speck from Quality Paint Supplies
who not only donated all the exceptional-quality colour
paint, but popped in on both Saturday and Sunday and
then again to watch the children seeing the murals for
the first time.

Some of the amazing Painting It Forward 2015 team
The Daniel and Friends Fund, together with one of
our newest partners Michelle Phillips from
Synchronize Systems (and our on-site medic for the
weekend) wish to congratulate Chris Lategan on
the wonderful success he achieved with
Painting It Forward 2015! We look forward to what
2016 brings for this inspiring initiative.
And the proof, as they say, is in the pudding...

Thursday, December 3, 2015

Santa Shoebox Project 2015 - Sive Nathi Licensed Home

Our Santa Shoebox Project this year was dedicated to the Sive Nathi Home in Blackheath.

Sive Nathi Home provides a full-time care facility for forty children, between the ages of 3-18 years old, each of whom struggle daily with the conditions related to their severe disabilities. Any child who faces profound challenges as a result of disability (or any other cause) is heartbreaking in itself, but a child who does so without the security, comfort and nurturing of their family, affords the situation empathy and concern on a whole new level. Being mothers to children with special needs ourselves, the reality of these children's circumstances resonated profoundly with us and there was little consideration needed before choosing Sive Nathi Home as the recipient of our Shoebox Project for 2015.


Sive Nathi (which means "God Hears Us" in Xhosa) not only provides 24-hour care to children who are mentally and/or physically challenged, but some of whom are faced with being HIV Positive as well.  Doing what they can to help lessen the trauma of being orphaned or abandoned (whether by choice or because of financial restraints), the carers are responsible for ensuring that each child enjoys a healthy, balanced diet, has their hygienic needs met and receives regular exercise and medical care when needed. Those children who are able to also attend the nearby Astra School, which specialises in physically challenged students.

In 1997 Lorraine Joja opened her home in Khayelitsha to 15 children with special needs, making use of a wooden hut across the road for additional accommodation, with only 5 or 6 staff members to help her. With there being an unquestionable demand for a facility of this nature, the children grew rapidly in number and by 2001 a bigger and better-equipped facility was desperately needed. Thankfully a generous sponsor arranged for bond approval for a home at 59 Roberts Street in Blackheath. Shortly thereafter ABSA Bank stepped in and provided further assistance by setting up a Trust in the name of Sive Nathi Licensed Home and donated the property to the Trust. Sive Nathi Home officially took occupation in June 2001.
The home currently has 21 caregivers (who work 12-hour shifts on a 2 days on-2 days off rotation), 2 cooks, 2 cleaners, 1 handyman, 2 drivers, 1 laundry worker, 2 supervisors,1 staff nurse and 3 admin workers.  Lorraine Joja (Director and Manager of the facility) is still actively involved in the day-to-day running of the home and can often be found interacting with the children throughout the day. Having reached its maximum capacity of 40 children but with an ever-increasing demand to accommodate more, one of the home's core objectives at this point is funding for bigger premises, as well as the additional staff requirement which will accompany an increased number of children.

As Kim Mqalo (Sive Nathi's Project Co-ordinator) proudly showed us and Minki Burger (Daniel and Friends Fund's newest ambassador) around the facility, the time, effort and care that has gone into ensuring "their children" are receiving the best possible care became clearly obvious. From hanging toys on the ceiling for those mostly bedridden to enforcing a routine which ensures each child receives adequate stimulation and attention and even encouraging the parents of those children largely deemed "abandoned" to begin nurturing relationships and bonds with their children, one can't help but wish for a way to contribute more substantially towards them reaching their goals.

Should any of our followers wish to make a donation to this end, Sive Nathi's banking details are:

Bank Name      : Sive Nathi Licensed Home

Account no      : 271479620

Bank                 : Standard Bank

Branch             : Tyger Manor

Branch Code    : 050-410 

 Tel /Fax no.: (021)905-6048



Wednesday, November 25, 2015

A High-5 to our unsung heroes...the siblings of our children with special needs!

On Sunday, the 8th November 2015, the Daniel and Friends Fund held its very first Sibling Day - a day dedicated to the siblings of our children with special needs.

Too often the compromises made by the siblings of children who have special needs, go unnoticed. Not intentionally of course, but when your medically/neurologically fragile child and his/her care takes up a large portion of your day, trying to remember to offer a word of thanks and a grateful smile before navigating your exhausted body to bed (where often a night filled with several disturbances awaits) just doesn't always happen.

We, as adults, sometimes struggle to completely make peace with the unexpected challenges we have to cope with once there's a diagnosis on the table, so it's important to bear in mind that "the other" children are more than likely struggling the same challenges but without being equipped with the emotional maturity and wisdom one needs to even begin forging a way forward through the uncertainty and, often, chaos your mind is initially filled with. Having your life strewn with complications you could never have imagined, compounded by the reality that you are more than likely trying to make sense of it all with a little less parental presence, can be daunting for even the most well-adjusted, confident kid.

The following excerpt by Linda Carlson published in 2004, offers essential guidance on trying to create an environment wherein being the sibling of a child with special needs can work towards building a strong and admirable character :


Accurate, age-appropriate information regarding the special need :
Without it, children will create their own explanations, or worry needlessly about whether they harmed their sibling. Kids who aren’t given accurate information about siblings’ health issues may overly identify with the sibling. Children who misunderstand the health issue or its cause may also feel guilty that they were “spared.” And, without adequate information, siblings may believe they share—or will develop—the problem.

When parents discuss the health condition with their other children, it is imperative that they be calm. If necessary, says Mary McHugh in Special Siblings: Growing Up with Someone with a Disability (Paul H. Brookes Publishing Co., 2003), parents should rehearse until they can talk without becoming upset. It is also important that this information be age-appropriate. Just as we provide sex education with increasingly more sophisticated and more detailed terms as children mature, so should special needs be discussed with increasingly more complex language. These conversations need to be repeated as kids’ ability to understand and retain information improves—and parents need to initiate these discussions. This is especially true if families are separated even for short periods; the healthy child who is left when parents accompany a sick child to a medical facility needs honest answers about how treatment is progressing.

Parents need to be reminded that children may be afraid to ask questions or report problems they are having with or because of the special needs child: they may not want to upset their parents or they may be ashamed of their own feelings of anger, jealousy or resentment. The siblings’ need to grieve must also be recognized, as McHugh points out. Not only did she and others like her miss out on the love and attention they craved as children, “We weren’t allowed to grieve for our siblings who were born with a disability. The brothers and sisters who can’t hear us or see us or play games with us. We were told, ‘Think how lucky you are . . .’

Long-term, being unable to discuss a special-needs situation may cause several problems. The siblings may grow up denying their emotions. Their actions may be inconsistent with their feelings: for example, a child might act as if he wants no affection, when he actually aches to have his emotions recognized. Kids who are not allowed to demonstrate grief, anger or jealousy may have difficulty in their relationships with others, including the sibling with the disability; be vulnerable to depression and even suicide; and may express their anger with anorexia, bulimia or other inappropriate ways, McHugh adds.

Attention to their Developmental and Emotional Needs:
A family with a special-needs child faces intense time and emotional demands. This is particularly true when a special-needs child is at home full-time. Even if this child is enrolled in school or another daytime program and there is extra support from extended family or friends, the care is substantial and impacts every aspect of family life. In Siblings of Children with Autism: A Guide for Families (Woodbine House, 2003), Sandra L. Harris and Beth A. Glasberg stress that besides discussing health issues and grief, parents need to acknowledge the legitimacy of every child’s need. Meeting these needs may mean that the entire family does not participate in every family activity or trip.

Harris and Glasberg point out that some parents are determined to always include a special needs child, determined to signal that this is a full member of the family. In practice, this doesn’t always work. If one child cannot attend summer camp, the other children shouldn’t be denied the opportunity to go. Just as a toddler might be left home when the family attends a concert, so might parents select which activities a special-needs child can participate in appropriately. This is especially true when the activity—say, the concert or a ceremony—involves another child. These events also require parents to plan ahead, to ensure that trustworthy respite care is available.

Finally, parents must ensure that a healthy child is pursuing his or her interests, not striving to achieve in areas that are important primarily to the parents. Some kids, reminds Meyer, feel compelled to excel to compensate for what the special-needs child cannot achieve.

Help with peer relationships :
Another issue is fitting in with friends. As kids near adolescence and rely more on peers, they become vulnerable to the comments others make. Comments about health conditions can be particularly hurtful. Parents need to be aware of how easily young people are embarrassed in front of their friends. They may want to practice how kids can respond to hurtful comments.

Recognition of their accomplishments and time alone with their parents:
Experts also emphasize the importance of each child—in every family—having separate time with each parent and with the parents together. This might be as simple as a bedtime chat with a different parent each night or an occasional outing alone with both parents. Healthy kids who don’t get enough attention may end up discipline problems, because they learn that acting out is one sure way to get noticed.

Especially when children are young, parents need to be prepared to handle fear, anger and possibly aggressive behaviour. They have what may seem to be the overwhelming challenge of dealing with a special-needs child at the same time they are comforting or protecting a sibling who has been frightened or hurt. If the special-needs child has grabbed toys or destroyed belongings, the parent needs to know how to help the victimized sibling describe his anger. The parent also needs to empathize with the wronged child and, to the extent possible, impose consequences on the other child. This might mean a time-out, cleaning up a mess or paying for the replacement of an item. Whenever possible, special-needs children should be subject to the same rules as the other children.
As healthy children grow toward adolescence, they should be able to join clubs, attend sleepovers and develop friendships of their own. Parents need to ensure that these kids don’t have so many chores or child-care tasks that they cannot explore interests outside the home. When they graduate from high school, they should be encouraged to pursue their own dreams. Parents should be sensitive to the possibility that teenagers may feel obliged to stay at or near home to provide emotional or physical support for parents and the special-needs child.

Written by Linda Carlson and first published in PEP Talk. Copyright Parenting Press 2004. Reprinted here courtesy of Parenting Press, www.ParentingPress.com/peptalk.html"

One of the suggestions mentioned above "..an occasional outing alone with both parents." was one we tackled with enthusiasm and excitement as we invited parents and unaffected siblings out to a morning of tenpin bowling, followed by a group lunch thereafter. Treated to a generous discount by Magic Bowling Grand West  and yet another from Silver Dollar Spur Grand West, not to mention fabulous service, it was a morning enjoyed by all and definitely the first of many Sibling Day functions to come

Mom, Samantha, and daughter Anastacia going neck-to-neck

Connor and Luca intent on choosing the right colour ball

Mom, Kharshifa, and her beautiful teens Abdul-Maliek and Kauther

Meghan and Chrisna 

Serious business on the Dads' lane

Dad, Bernard, and Daniel sharing a giggle

Raymond and Ethan watching Ethan's ball in anticipation

Connor and Cezanne enjoying their precious time together

What great moments are made of...laughter, chatting and
bonding...not just the parents and kids, but the siblings had
an opportunity to get to know each other better and even
strike up a friendship or two

Saturday, November 14, 2015

Year-End Function

On Saturday, 14th November, more than twenty of our Daniel and Friends Fund families got together to celebrate another successful year of building a stronger, more intimate special needs community.  The function, held again at the beautiful Eaglevlei Wine Farm/Restaurant, situated just off the R101 in Muldersvlei, Stellenbosch, enjoyed outstanding service from the staff and had every need catered to by Events Coordinator, Amanda Goosen.
Emotions ran high as proceedings began with a short memorial dedication in remembrance of the children who had earned their angel wings due to complications of the respective conditions they suffered with, but tears were soon replaced with smiles as newly-appointed representatives, committee members and the most recent addition to our DANIEL AND FRIENDS FUND family as ambassador, Jordyn McKenzie (reigning Miss Teen Hope Western Cape 2015) came forward to receive an official welcome and warm celebration.
Once the delicious buffet lunch and refreshments had been enjoyed, it was time for a certain Christmas suit-clad gentleman to make his entrance, spreading an infectious cheer amongst the children and managing to attract giggles from even the teenagers. Gifts safely tucked away and many a chocolate-stained mouth revealing just how decadent the gorgeous cake was, the morning ended with very many sittings at the entertaining photo booth provided again by Kiekiefoto.
Little Anja Hattingh mesmerised by an enchanting Mark Halligan-Jolly

Priviliged to have spent the day with such an inspirational group
of people

Kate, Lianie, Jordyn and I

Wonderful to have shared with morning with a few members
of our Board :
Mr Nico Walters, Kate, Prof Pieter Fourie, Lianie, Dr Rose-Hannah Brown and I