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...


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 :

"WHAT'S NEEDED BY SIBLINGS OF SPECIAL NEEDS CHILDREN

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

Monday, November 2, 2015

Farewell...for now...Butterfly Angel, Bells

On the 21st October our beautiful butterfly, Isabella Maria Soares (aka "Bells" aka "Peanut") exchanged her earthly wings for those Heavenly-bound. Isabella's lungs, having fought off many nasty infections, struggled to recover from the last one and ensuring a healthy flow of oxygen to her precious body, despite ventilation, just became too much.
 
It was with heavy hearts that we made our way to Vredenburg last Wednesday to bid our final farewell to Isabella. A church filled to bursting point bid witness to just how loved and respected the family is...and the priest's sermon had barely begun when many a tear had already fallen. His words rang so true...Isabella came into this world with a struggle and left it equally so.
 
In her short four years, Isabella faced more battles than most of us will ever know. Born at full term on 22 June 2011 by normal delivery but was soon after transferred from West Coast Hospital to Panorama NICU after she only managed her first effective breath after 45 minutes. At Panorama Hospital Isabella was diagnosed with Perinatal Asphyxia, severe HIE, Meconium Aspiration and Epilepticus. She was ventilated for two weeks and underwent an MRI which confirmed brain damage. Doctors confirmed an official diagnosis of Quadriplegic Spastic Cerebral Palsy and prepared Isabella's parents, Michelle and Mario, for the worst.
 
Despite requiring several procedures to ease Isabella's eating challenges, needing medication to control seizures and later developing Khyposis, to name but a few of the hurdles Isabella encountered, the love, passion and peace with which the family embraced life was something to behold. Michelle, who very obviously dotes on Isabella and her younger brother, Marcello, is never to be seen without a smile and twinkle in her eye. Popping in (from 150km's or so away) to join us for a burger on Mandela Day last year, while fussing over Bells' gorgeous locks and gazing lovingly into her daughter's face is a memory to last a lifetime...such a "normal"  mommy-daughter moment.  
 
Mario, Michelle, Marcello and our beautiful Isabella will forever remain part of our Daniel and Friends Family...we can only but offer sympathy beyond imagine and a promise to be there with them through this time xxx
 
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