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 - BACKGROUND

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

 

 

 

 

 

 

 

 

 

 

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

 

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

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

 

 

Raising Awareness - Kabuki Syndrome

Today we showed our support for raising awareness for Kabuki Syndrome :

A brief glance at Kabuki Syndrome :

Kabuki Syndrome is a rare, genetic disorder which occurs somewhere between 1 in every 10,000 to 32,000 births.  In 1968 Dr Yoshikazu Kuroki and colleagues examined a boy in Fukuoka in the southern part of Japan, with a unique set of malformations that did not fit into known syndromes. Ten years later another child with similar characteristics was examined in Kanagawa, followed with three others in the ensuing two years.  At the same time in 1967 Dr Norio Niikawa and colleagues discovered a female infant with an unusual set of characteristics that, again, did not fit into known syndromes. They found four other individuals from Hokkaido, an island north of Japan. In 1981 the combined findings of these individuals were presented as a new malformation and the name "Kabuki Make-Up" was selected because of the facial resemblance to the makeup of actors in Kabuki - traditional Japanese theatre. The arched eyebrows, thick eyelashes, eversion of the lateral lower lid and long palpebral fissures all contributed to this resemblance, especially in children of Asian descent. It has also been referred to as Niikawa-Kuroki Syndrome but is now more commonly known as Kabuki Syndrome.

The health issues of Kabuki Syndrome are variable. Many different health issues have been observed among children with Kabuki Syndrome, however, an individual child may have only a sub-set of those issues. Those born with heart malformations, cleft lip/palate or other obviously physical anomalies will be more likely to receive an early diagnosis, while for others this process may take longer.

MEET MICHAEL

Michael Arthur Smit was born four weeks premature on the 4th January 2006, weighing in at just 1.6kg's and with major problems.  Michael had two massive holes in his tiny heart and was in high-risk heart failure. The doctors did everything they could to keep him alive for the next six weeks, at which time Michael underwent open-heart surgery, weighing in at a still-fragile 2.2kg's. After the operation though life seemed to return to normal and other than being very tiny, Michael was doing very well.

However, after Michael's first birthday everything just seemed to start going wrong - he spent most of his time in and out of hospitals, sometimes for weeks at a time, as Michael contracted virus after virus. At this point Michael required regular physiotherapy, medication and feeds. The doctors eventually decided to give Michael a gastrostomy tube in his tummy in the hope that the extra feeds would help him pick up weight. At fifteen months old Michael underwent another surgery for a Nissen Fundoplication to help manage his severe reflux and just one month later yet another surgery to stretch his oesophagus as the Nissen had been done too tight.

When Michael was eighteen months old a geneticist in Holland diagnosed him with Kabuki Syndrome. It came as a big shock to parents, Lizel and Barnard, but did explain why Michael was suffering with so many medical issues. Michael also suffers with common variable immune deficiency which results in his immune system not functioning effectively. To help remedy this, Michael underwent another surgery to insert a Portocath and received his first Polygam (immune treatment)at eighteen months and every three weeks thereafter. Michael now receives Octogam on a four-week cycle.

After extensive physio and occupational therapy Michael learnt to sit by twelve months, crawl by the age of two and walk by the age of three. Side effects of the Kabuki Syndrome include speech impairment, mild cerebral palsy, eating difficulties, poor muscle tone, common variable immune deficiency and cognitive challenges.

Michael will be ten years old soon. He attends the Alta du Toit School for mentally handicapped children, which he loves. Michael loves his friends and laughs all the time. He still needs extensive physiotherapy, occupational therapy and speech therapy now and in the future, to help him cope with all the specific problems.

"Although Michael's life is full of challenges, we take each day as it comes and are very grateful to have him with us. He is funny, full of life and surprises us each day. He loves his food and is very strong-willed."

Sam doing his green bit for raising awareness

 

What would any Awareness Day be without this precious little face

Sienna Kuhnel xxx

20 October is Down Syndrome Awareness Day (SA)

Down syndrome (DS or DNS) or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21.^[1] It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.^[2] Down syndrome can be identified during pregnancy by prenatal screening followed by diagnostic testing, or after birth by direct observation and genetic testing. Regular screening for health problems common in Down syndrome is recommended throughout the person's life. Down syndrome is one of the most common chromosome abnormalities in humans,^[3] occurring in about one per 1000 babies born each year.^[2] In 2013 it resulted in 36,000 deaths down from 43,000 deaths in 1990.^[11] It is named after John Langdon Down, the British doctor who fully described the syndrome in 1866.^[12] Some aspects of the condition were described earlier by Jean-Étienne Dominique Esquirol in 1838 and Édouard Séguin in 1844.^[13] The genetic cause of Down syndrome—an extra copy of chromosome 21—was identified by French researchers in 1959.

SIGNS AND SYMPTOMS
Those with Down Syndrome nearly always have physical and intellectual disabilities. They also typically  have poor immune function and generally reach developmental milestones at a later stage. An increased risk of a number of other health problems is usually also present, including congenital heart disease, epilepsy, leukemia, thyroid diseases and mental disorders, among others.

MEET ROSHAN

Roshan was born on the 26^th of May at gestational age of 37.5 weeks, weighing only 2.720kg.

After Roshan was born, he was assessed by a paediatrician and diagnosed with Down Syndrome, confirmed with genetic testing within the following week. At Roshan’s follow up consultation, a heart murmur was detected and we were referred to a Paediatric Cardiologist, who added an additional diagnosis of VSD (a hole in the lower chamber of the heart). To date, no medical intervention has been necessary to treat the VSD and we pray it will remain so.  

As Hypertonia (low muscle tone) is associated with Down Syndrome, Roshan required Physiotherapy and still attends Speech and Occupational therapy at present. He is non-verbal and we are in the process of having him assessed for Speech Apraxia to ascertain whether this might be contributing to Roshan’s not yet communicating verbally, despite his age. Roshan also has sensory issues and doesn’t always adjust to unfamiliar surroundings and people. He also suffers from GDD (Global Developmental Delay).

At seven months old, Roshan became very ill and was rushed to hospital.  After a series of tests and a biopsy it was discovered that he has Hirschsprungs disease, which required a colostomy until the infection subsided in his colon. At 10 months old Roshan had a pull through (follow up) surgery as well as an Orchidopexy.  In most cases, life resumes as normal after these surgeries, but because of Roshan having Down Syndrome as well, this is not the case – Roshan is dependent on the chronic use of laxatives and will be in nappies for many years to come. Because of Roshan’s heart condition, the use of anaesthetic makes every surgery risky.

From the moment I held my precious little boy in my arms I knew he was very special, even before any diagnoses were made. Roshan has brought a new meaning to parenting for me. He is teaching me and all those around him that children with special needs just need to be embraced lovingly by society.

Today Roshan is 3 years old and keeps us busy and on our toes. He loves water, dancing and playing with blocks and balls.  As yet, Roshan does not attend a nursery school as we have not been able to find one which meets both Roshan's personal needs, as well as our financial restraints. We would do anything to keep him happy and healthy, and look forward to being able to sign Roshan up for swimming lessons and equestrian therapy (horseriding therapy) one day in the future." Samantha, Roshan's mommy
 

 

 

AND LITTLE ANJA

"Our journey with Down Syndrome began when Anja was already seven weeks old. As neither scans nor blood tests during my pregnancy indicated any reason to suspect Down Syndrome, the diagnosis was a huge shock! We met with a cardiologist the very next day...I never knew I had so many tears. And they kept coming! Most babies with Down Syndrome are born with heart defects (in addition to a variety of other possible medical issues). Anja had a hole of about 5mm between the arteries which did not require surgery. What relief that news brought, as well as the blessing that she did not suffer from any other serious medical issues.

 

Anja's daddy, Jacques, made peace with the diagnosis from the beginning, saying "Anja is my little girl!" I, however, had to come to terms with it. Anja was being re-born in my eyes, I had to dream new dreams for her...accept the fact that she was even more special and would need me/us much longer than a typical little girl would. Developmental challenges...intellectual challenges...a lot of new "things"...a brand new girl we didn't know yet. We decided to take one step at a time and contacted the Down Syndrome Association of the Western Cape to set up a meeting. Later on we typed up an email to all our family and friends telling them about Anja, that she is our little girl and will be raised in the same way as her brother and that we remain the same people. We also stated that any questions were welcome. We realised immediately that acceptance was going to be the biggest challenge. 

 

Now, more than a year later, we have discovered that we are so lucky to have Anja in our lives. With her ever-present smile, we've learnt about unconditional love and the need to slow down as everything takes longer to master. Sometimes it is hard to see that your little girl is "behind" her friends, sometimes a tear finds its way down my cheek but I wouldn't want it any other way.

The hole in Anja's heart shrunk to approximately 1mm and she started crawling at 16.5 months. We've made many new friends along the way too, learnt about early intervention, physiotherapy, occupational therapy, disabilities, inclusion, genetics and much much more. Some days have been really hard but in so many ways Anja is the best thing that could have come our way - she and her brother fill our hearts and lives!

 

In November 2014 I began my "21 Cookies of Hope" project in support of Anja and our hopes for her and to raise awareness."    Mariaan, Anja's mommy

 

 

 

Little Sienna showing support for her DFF Family xxx

 

Raising Awareness - World Cerebral Palsy Day 07.10.2015

Cerebral Palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.  Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

 

An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement dysfunction, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all. Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe. Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects. Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

Every case of cerebral palsy is unique to the individual!

One person may have total paralysis and require constant care, while another with partial paralysis might have slight movement tremors but require little assistance. This is due in part by the type of injury and the timing of the injury to the developing brain.

Cerebral Palsy is...

• non-life threatening
• incurable
• non-progressive
• permanent
• not contagious
• manageable
• chronic 

As the Daniel and Friends Fund has many CP Heroes in our family, we were out in full force raising awareness and showing support xxx