For Daniel

Little Daniel le Roux earned his angel wings just seven days after Mariele Laurie, on the 23rd August 2013.  It is his courage and determination to live, through struggles we can barely comprehend, which became the inspirational vision behind the Daniel and Friends Fund.

 

I love writing...love re-creating memories and experiences simply be stringing the right selection of words together.  But I have struggled to find words which can, in any way, do Daniel and Mariele's stories justice.

 

Can there be any tragedy more unimaginable than losing your child?

 

Can there by any memory more cherished than one from which a whole new purpose is born?

 

At the Daniel and Friends Fund we regularly advocate that parenting a child with special needs not rob you of your dreams, your joy, your life...it merely requires shifting your perception of what those three things represent. But, while we are passionate about uplifting parents/carers, we are just as passionate about keeping it real and the reality is...very many parents of children with special needs face the possibility of losing their child at some point.

 

Channeling heartache and grief into an instrument through which you not only reach out to others, but dedicate yourself to ensuring a better quality of life for families travelling a similar path, is the very essence of why Kate and Lianie's vision for the Daniel and Fiends Fund is so powerful. 

 

 

 

Here's to a New Age!

The Daniel and Friends Fund has had an extremely busy couple of weeks.  I had mentally drafted a post, sharing not just the details of what we've been getting up to but, more importantly, the significance of it.  And how might taking part in a couple of charity walks and fundraisers be of significance? Well firstly, merely attending the most basic of events/occasions when you have a child/children with special needs, requires remarkably more planning than normal...whether you're arranging for someone to take care of your child and all the planning that goes with that or co-ordinating all the necessary preparations to have them join you.  Secondly, the passion and unwavering determination to retain at least some remnants of a "normal" life despite, sometimes near impossible, challenges is more than just significant...it's pretty darn close to heroic. And where there are heroes, there has to be a unicorn or two, or any other whimsical creature of choice...

  

 

And then one of our moms and DFF Representative, Sonja, sort of took the words right out of my mouth by posting this :

 



"These people who we are so blessed to have fun with, is our support group......SUPPORT GROUP! For those who do not know what it is like to be part of such a group I'd like to kindly offer that you join whichever group you need to should you face a challenge in your life.....we do not get together to cry and be sad....yes, there are tears....yes, there are sad stories, heartbreaking journeys.....BUT we hug and listen and care AND rise above the challenges to reach out to other people who might be feeling alone, feeling that they cannot speak out for fear of being judged, discriminated against, frowned upon....we are there to laugh, to be silly, to learn and to plan and bring to life projects that will serve our community.

 

Should anyone out there keep their pain to themselves for fear of the unknown, I want to urge you to take that step and turn pain into a positive outcome. With this specific group alone we have experienced so much awesomeness.....been silly at a "race", learned how to apply CPR, enjoyed outings together, planned pageant participation, awareness creation campaigns, cupcake mornings and art sessions....the list does not end. They're also giving back to the community by collecting pre-loved teddy bears for kids who want to share a hug, uplifting and maintaining an equestrian centre and supporting and advising each other through doctor's appointments, operations, scans, birthdays, achievements.....

WE are not there to sit around and feel sorry about our challenges - we are there to show our kids you can still try your best at an amazing life, we are there to show the world it can be done! Gone are the days of these challenges being locked up......here's to an age where we can be proud, where we can conquer, where we can love and be loved..."

One of the most profound comments I have heard over the passed few years came from an Occupational Therapist whose practice is literally a couple of kilometres away from her home, which means that she socialises/shops within the same area as many of her patients, yet sadly shared one day that she very seldom runs into any of her patients at the local shopping mall or restaurant, etc. Why? Because many of those families are opting for the security of their home as opposed to possibly exposing themselves and their child/children to anything from inappropriate staring to full-blown discrimination.

Thankfully though there is a formidable group of women who are not only casting those safer options aside, but inspiring others to do the same...



 

 

Who knew unicorns travelled in packs!

Ready to take on the Totalsports Ladies Race Stellenbosch

in aid of Breast Cancer Awareness :

Patricia/Chantelle/Meg/Nicky/Sam/Lizel/Justine

Kate/Lianie/Anastacia (in front)

 

Lizel, Patricia and Chantelle grabbing a photo op

with Andriette Norman

 

 

Sienna and Keenan enjoying the festivities

 

Not a single photo-propped opportunity went missed 

 

Nicky/Lianie/Kate

 

Nothing like some wet foam to awaken those muscles

on a cold, Winter's morning

  

Strolling down the home stretch

 

Little Sienna catching a ride with two beautiful unicorns

 And before we knew it, we had chatted and photographed

our way through the five kilometres. What a glorious

morning it was.

 

The Friday just before the TLR we celebrated Slipper Day with a little get together, for those moms who could make it :

 

 Slipper Day is a Reach for a Dream initiative,

a non-profit organisation which dedicates their

time and efforts to helping children with life-

threatening conditions, realise their dreams.

 

 



An interesting assortment of slippers were on show

Supermom Tamara blew us all away by coming along with all

four of her kiddo's...on her own!



Delish sarmies and a couple of cappuccinos later...

 

Group Pic

 

In the space of merely a few months, families dealing with special needs have definitely become more visible in the community...the hope that observation represents is overwhelming. Our moms are becoming more motivated, more assertive and more innovative in leading the way towards bridging the gap between our special needs community and the rest of society.

 

To this end, another one of our moms, Barbara Brooks, co-ordinated an awareness campaign called Kindness is Cool which launched it's first public event on Saturday, 15th August at St Faith's Church in Plumstead. The vision behind the campaign is to not only help raise awareness for the very many challenges families affected by special needs have to overcome, but also to encourage society to adopt the mindset that being KIND to people who have special needs is actually COOL.

Barbara sharing with us the inspiration

behind her vision for the Kindness is Cool

Campaign - her daughter, Abigail

 

 

 

 

Remembering Mariele...

On this day, two years ago, Kate (our Daniel and Friends Fund Chairperson) and her husband, Dirk Pieter, held their precious little Mariele for the last time...well, physically at least.

 

Mariele suffered with Aicardi-Goutieres Syndrome, an extremely rare Neurodevelopment/Inflammatory Disorder affecting the brain and the skin. The presentation of the condition is characterised by microcephaly, neonatal seizures, poor feeding, jitteriness, cerebral calcifications, white matter abnormalities and cerebral atrophy.

 

Mariele was admitted to Red Cross Children's Hospital at the beginning of July 2013...and was diagnosed with Pancreatitis and Renal Failure shortly thereafter. The weeks that followed were extremely traumatic for both Mariele and her family, who stood by helplessly as their little girl endured immense pain and discomfort.  On the 11th of August, doctors shared with Kate that they did not think Mariele would be going home...on the 14th of August a decision was made to stop all treatment and ensure little Mariele was as comfortable as possible.

 

On the 15th August little Mariele's spirit slipped away and one day later she passed on.

We dedicate this post to little Mariele, to her parents - especially her mom who keeps Mariele's spirit alive through her passion and dedication to helping other families who have children with special needs...to Mariele's extended family and, of course, to little Liza who every now and again randomly bursts into precious giggles as Mariele gently tickles her xxx

RAISING AWARENESS - August is SMA Awarenss Month

What is S.M.A. (Spinal Muscular Atrophy)

Spinal Muscular Atrophy (SMA) is an incurable autosomal recessive disease caused by a genetic defect in the SMN1 gene which codes SMN, a protein necessary for survival of motor neurons, and resulting in death of neuronal cells in the anterior horn of spinal cord and subsequent system-wide muscle wasting (atrophy). Spinal muscular atrophy manifests in various degrees of severity which all have in common general muscle wasting and mobility impairment. Other body systems may be affected as well, particularly in early-onset forms. SMA is the most common genetic cause of infant death. The most severe form of SMA Type I is sometimes termed SMA type 0 (or severe infantile SMA) and is diagnosed in babies that are born so weak that are able to survive only a few weeks even with intensive respiratory support. SMA type 0 should not be confused with SMARD1 which may have very similar symptoms and course but has a different genetic cause than SMA. Development milestone attainment is commonly measured using a specially modified Hammersmith Functional Motor Scale Symptoms. The symptoms vary greatly depending on the SMA type involved, the stage of the disease and individual factors and may include:

• Areflexia, particularly in extremities
• Marked hypotonia in legs, arms, rib, chest, and bulbar (facial) muscles, limpness or a tendency to flop
• Difficulty achieving developmental milestones, difficulty sitting/standing/walking
• Adopting of a frog-leg position when sitting (hips abducted and knees flexed)
• Respiratory distress, weak cough/cry
• Bell-shaped torso (caused by using only abdominal muscles for respiration)
• Difficulty sucking or swallowing, poor feeding
• Fasciculations (twitching) of the tongue
• Arthrogryposis (multiple congenital contractures)

 

Meet Hanno Fourie 
 





Hanno was diagnosed with SMA I at six months old. He was born full-term by C-section following an unproblematic pregnancy. There were no prenatal or perinatal complications, his APGAR score was 9/10 and his birth weight was within average ranges. Motor, visual and social functions developed normally within the first six weeks of life, with appropriate reflex sucking, swallowing and rooting, eye-to-eye contact, advancing neck control and grasp reflexes. Muscular weakness became apparent by eight weeks and feeding difficulties arose. Following neurological examination and genetic testing, Hanno was diagnosed with SMA 1 at six months old with a poor prognosis. He spent several months in hospital with pneumonia shortly after the diagnosis and in October 2012 a decision was taken to ventilate him.  He returned home in the December of 2012 and has since been confined to a wheelchair, due to significant generalised muscle weakness and Hypotonia.  Hanno is fed primarily through a Gastrostomy Tube and is ventilator-dependent, requiring 24Hr care.  He has an older sister, Elle, who is six years old and both medically and cognitively well.  Despite profound muscle weakness, compromising both gross and fine motor skills, cognitive development in children with SMA does not necessarily differ significantly from that of their peers.  IQ scores have been found to be superior in some cases.  This said, the severity of the condition would be expected to determine the potential for cognitive development, for instance, progressive muscular atrophy compromising the coordination of fine motor skills for grasping and manipulating objects and affecting muscle groups used in speech production would interfere with gains in cognitive development in related domains and such effects would likely be cumulative over time.

Hanno and his mom, Chantelle

 

"At seven months old professors told us to go home and love Hanno for two months! He is the FIRST child with SMA1 on life-support at home.

 

Hanno is still terminally ill and not a human on Earth has a cure for SMA.

 

However...Hanno is developing at an excellent pace since his brain is 100% functional - his doctors and professors are highly impressed.

 

Sister Jane Booth of Red Cross Childrens Hospital paid a surprise visit to our home recently and gave us a "thumbs up"! We are now classified as Professional Home Care Specialists. Again, the new machine container imported for Hanno's ventilator will, with immediate effect, be issued to all children on life-support under Sister Jane Booth's care.

 

We are proud to be able to say that WE managed this!

 

As Hanno's mother, I will be assisting Sister Jane Booth this year with new life-support families in respect of home care and implementation of home care plans. Hanno will be actively participating in helping parents understand what this way of life entails for children on life-support.

 

Six years ago children on life-support remained in Red Cross Hospital and never saw their homes again. With Hanno's highly intelligent abilities guiding us, we are now able to fully understand and act on the needs of children dependant on life-support" 

 

 Almost three years on, after been giving merely two months to live, Hanno is not only defying the odds predicted for his survival, but making sure and steady progress...when Hanno isn't impressing those around him with his remarkable iPad skills, he's making the most of his constantly-advancing speech skills to express his delightful sense of humour.

Follow Hanno's story on the official  Hanno Fourie Website