by Sanusha Shamdutt | Apr 2, 2024 | Campaign, Featured
10-year-old Marcus-Craig Knop, affectionately known as MC from Witbank, Johannesburg, is a little boy who embodies resilience and courage despite facing challenges hidden beneath his seemingly ordinary exterior.
MC is a non-verbal autistic and unique little boy who was first diagnosed at 22 months old with Pervasive Developmental Delay, an informal diagnosis for Autism Spectrum Disorder (ASD). He was formally diagnosed with ASD when he was three years old. Being non-verbal autistic meant that MC did not communicate with anyone, and this diagnosis, while tough on MC, was also really difficult for his family.
Image above: MC during the Woodside Sanctuary Spring Day festivities
‘At first, it felt like our whole world was tumbling into pieces. All the hopes and dreams I had for MC changed overnight. Yet, this was the beginning of a brand-new adventure.’ says Meryke, MC’s mum.
However, two years ago in 2021 MC found solace in the embrace of Woodside Sanctuary, a home for the intellectually disabled, which offers daily stimulation, occupational therapy, physiotherapy, morning ring, social outings which are accompanied by staff, regular doctor visits (in house), annual psychiatric evaluations and checkups. For MC and his family, the journey to finding the perfect place for him was arduous, but when they discovered Woodside, it became a ray of hope and transformation.
Within the nurturing walls of Woodside, MC has flourished in unimaginable ways. In just two years, he has achieved milestones that once seemed out of reach, surpassing seven years of progress elsewhere. Through the dedicated care and support provided at Woodside, MC has found his voice, making friends, and even mastering the art of speaking some Zulu words.
Image above: MC in a colouring activity class in the simulation department at Woodside Sanctuary
‘Radical improvement are the words that describe how Woodside has changed MC’s life. He has gained a vocabulary that ranges far wider than I could ever expect. He is now fully potty trained. His social skills improved so much that we can now go on family outings and eat at a restaurant. He is no longer running away at the first chance he gets. He can now compose himself and verbalise his basic needs.’ says proud mum Meryke.
The journey towards independence has been significant for MC. Every step forward at Woodside reflects a triumph of spirit and determination. Here, MC receives comprehensive therapy and stimulation tailored to his needs, ensuring holistic development and growth.
More than just a care facility, Woodside is home to MC. It’s a place where he is not judged but celebrated for his uniqueness. Surrounded by peers and caregivers who understand him, MC can truly be himself, embracing his true identity without fear or reservation.
Image above: MC with his mum Meryke, dad Petrus, and siblings Megan, Cayleb, and Klara
Yet, amidst the warmth and love of Woodside, financial constraints loom large for MC’s family. With monthly fees amounting to R13,649.00 and additional expenses for medications and other necessities, the financial burden weighs heavily on his mother, who strives to provide for MC and his siblings on a teacher’s salary.
Despite receiving minimal financial support from MC’s biological father, the financial strain persists, threatening MC’s continued stay at Woodside. As an NPO, Woodside faces its own financial challenges, unable to fully fund MC’s care amidst numerous responsibilities.
MC and his family are reaching out for help through their crowdfunding campaign on BackaBuddy where they have already raised over R18 000 of his R228 000 with the help of 21 amazing donors.
Image above: MC at the Woodside Sanctuary Christmas party
‘With the money raised on BackaBuddy, MC will be able to stay at Woodside and continue his journey of improvement. He will be able to have his friends with him and will receive the care and therapy that he so desperately needs and deserves.’ explains Meryke.
Their humble request echoes the sentiment of countless families navigating the complexities of caring for a loved one with special needs. With your assistance, MC can continue to thrive at Woodside, embracing every opportunity to grow and develop to his full potential.
‘Thank you to each and every one who has donated to MC’s campaign. I know that thank you may seem too little for the huge impact that you are making in MC’s life and future. If I could, I would scream from the rooftops how extremely thankful and grateful I am to each and every person donor that generously opened up their hearts towards MC.’
by Sanusha Shamdutt | Mar 15, 2024 | Campaign, Featured
Sam Stewart, a 48-year-old International External Affairs Manager from Plumstead, has been on a roller coaster journey of challenges, victories, and an unwavering spirit that refuses to surrender.
Nineteen years ago in 2005, Sam received a devastating diagnosis—breast cancer with a mere 7% chance of survival and only six months to live. Against all odds, she triumphed over cancer, not just for herself but for countless others facing the same battle.
Pictured above: Sam Stewart
“Sam was in a complete state of shock and disbelief when she found out that she had cancer. She was coerced into having surgery by the surgeon without any second opinion. A decision she regrets as she knows now that the surgeon only gets paid for surgery. Not for making the patient think of options. She knows that cancer is now behind her but this is after having been 152 times to the chemo room over 10 years. Sam is now on only natural health remedies.” says Natalie Dreisenstock, a long time friend of Sam who took the incredible initiative to share Sam’s story with everyone who would listen.
Sam’s tenacity extended beyond her personal triumph as she fought for the right treatment, forming an NGO that aids patients in navigating the complexities of medical aid treatments. This organisation, born from her own struggle, continues to be a spark of hope for those in need.
In the midst of this noble endeavour, Sam and her husband Allan (59), faced a different kind of adversity during the 2019 COVID-19 pandemic—financial ruin. The couple were in a very stable financial position and Sam left her corporate job with Hewlett Packard (HP) to focus on her true passion of motivational speaking and her NGO SoulSync assisting cancer patients to access treatment. Allan had been employed for over 7 years with a large South African IT company, as the Regional Executive for the Cape Region.
Pictured above: Sam and her husband, Allan enjoying a night out
“The hardest part about losing everything is your pride, the best part of it is how liberating it is to be free of all the consumer driven expenses that mean absolutely nothing really. We were forced to look at what really matters in life, we learnt to live on next to nothing and our relationship just got stronger and stronger as the only thing we really had was one another.” says Allan.
At the end of 2019, Allan received an excellent offer to join a global IT Organisation. By March 2020 Covid and the associated national and international lockdowns took the world by storm, and Allan found himself a casualty of the global cutbacks, so many of us experienced. He left the company in October 2020 and since then has applied for countless positions and attempted to start his own business. For some time they survived on savings, but ultimately ended up living with friends or house-sitting to keep a roof over their heads.
In August 2023 Sam found a permanent position with World Animal Protection and they were finally able to rent a home, having moved an astounding 19 times in just two and a half years, and get on to medical aid again. Allan has been putting all his energy into getting his 2 businesses, Flowte Franchise and SalesSync, a coaching business, off the ground.
Pictured above: Sam and Allan Stewart
“I was ecstatic when I got the job. It was such a wonderful time, I was finally going to do something for animals which is my biggest passion and joy. Getting this job also meant having medical aid and a place to stay and start over again.” says Sam
However, just as they glimpsed a positive turn, fate dealt a cruel blow—Sam suffered a hemorrhagic stroke on February 4th 2024.
The stroke, a severe deep brain bleed in the basal ganglia, left Sam paralyzed on her right side and robbed her of speech. Allan, who is an ex-medic, acted swiftly, and managed to get Sam to emergency care within 15 minutes. Though Sam has made some progress in her recovery, her ability to conduct business conversations, read, spell, or grasp complex concepts remains impaired.
The problem they face now is Sam will unlikely be able to work for the next 8 months to a year, and it is critical that during her recovery they have sufficient income to pay for medical aid and rent. Allan will have to act as Sam’s primary care-giver as they cannot afford full time care, and that will impact his ability to work.
Pictured above: Sam in hospital after her stroke
Navigating the complexities of the medical system has become yet another battle for the couple. The medical aid, despite being legally obligated to cover Sam’s condition as a prescribed minimum benefit, has proven challenging as they tried in every possible way to delay the authorisation for the emergency. Their fight for authorization, therapies, and proper care is ongoing, adding to the mounting pressure on both Sam and Allan.
Amidst this struggle, Allan has put his businesses on hold to focus on Sam’s recovery. Sam’s own employment is at risk due to the obvious challenges she faces. The couple, demonstrating resilience and commitment, face each day with determination, love, and strength, even as time works against them.
Now, a call for support echoes through their story. Friends, family, and well-wishers are rallying to raise R300 000 through a crowdfunding campaign on BackaBuddy where they have already managed to raise over R80 000 with the help of 27 incredible donors.
Pictured above: Sam enjoying being surrounded by nature and sunshine
The money raised will alleviate financial burdens, cover medical expenses beyond the aid rates, provide necessary care, and supplement lost revenue from work. The hope is to ease the financial strain, granting Sam the time and resources needed for a thorough recovery—estimated to be no less than eight months and potentially exceeding a year.
“The generosity and kindness that has been shown to us is overwhelming. Thank you from the bottom of our hearts. We’ve been through tough and defining times before and we are determined to get through this challenge with flying colours. Watch out for Sam 2.0, the upgrade who will emerge. Without your help this would be near to impossible.” concludes Allan.
by Sanusha Shamdutt | Mar 15, 2024 | Campaign, Featured
5-month-old Leah Strydom from Westonaria in Johannesburg, is a tiny warrior who has been diagnosed with congenital hearing loss due to the uncommon occurrence of having different hearing loss levels in each ear.
‘Leah is such a delight at five months old! Every time she wakes up, her face lights up with the biggest smile, radiating joy and contentment. She’s always chattering away, and her happiness is infectious – being around her just fills you with warmth and happiness. She hardly ever cries, taking everything in her stride, which makes parenting feel effortless. Mornings with her are absolutely heartwarming; her smile sets a positive tone for the whole day. Leah is already so social and playful, curious about everything around her. Her calm and peaceful presence makes spending time with her the highlight of the day. She’s not just a joy to be around; she’s like your little partner in all the daily adventures!’ explains Leah’s mum Mandy.
Pictured above: Baby Leah Strydom
Leah’s story begins during her time in the womb, where unforeseen circumstances added a layer of complexity to her health. At 19 weeks pregnant, Leah’s mother Mandy was hospitalised with Influenza A. Concerns arose when, during the 24-week scan, Leah’s head growth lagged by two weeks, prompting a referral to a sonographer and then a fetal specialist. The possibility of Microcephaly, a neurological condition characterised by an abnormally small head size in infants, was discussed, but negative blood tests ruled out infections. Despite recommendations for DNA testing and an MRI, Leah’s parents chose to embrace her as she was, trusting in what they believed to be God’s plan.
‘As Leah’s parents, we were deeply saddened when we learned about her hearing loss. Despite facing difficulties during pregnancy, we were committed to caring for our beloved daughter no matter what challenges came our way. At first, we didn’t fully understand the extent of her hearing impairment, so we prepared ourselves for potential struggles. Fortunately, her hearing loss turned out to be less severe than we initially feared, especially compared to the concurrent concern of microcephaly. Without delay, we began learning about hearing technology, hoping for a positive outcome that would help Leah experience the world of sound. ‘ says Mandy
Pictured above: Baby Leah with her mum Mandy, dad Peet, and sister Mialeigh
Leah’s hearing loss became apparent when she failed her newborn hearing test. A series of OAE (Otoacoustic Emissions), sounds that the ear produces in response to external stimuli, tests and an AABR (Automated Auditory Brainstem Response), type of hearing screening or diagnostic test that measures the electrical activity of the auditory nerve and brain stem in response to sound stimuli, followed, all indicating that she could hear, albeit not perfectly. The conclusive diagnostic ABR (Auditory Brainstem Response) and SSR (Steady-State Response) confirmed the hearing impairment, marking the beginning of Leah’s unique exploration into the world of sound.
‘As parents, we went through a roller coaster of emotions when we found out that our 4-month-old baby has damaged hair cells and severe hearing loss. It was tough news to digest, but we took comfort in knowing that there are options for hearing solutions. With the help of hearing devices, we believe she can achieve the best possible hearing.’ – says Peet, Leah’s dad.
Leah’s parents then embarked on a journey of extensive testing and medical examinations. MRI results came back normal, ruling out any brain-related issues. However, Leah’s right ear presented mild to severe sloping hearing loss, while her left ear exhibited moderate to severe flat hearing loss, resulting in an average of 39% hearing loss.
Pictured above: A happy, baby Leah
Crucial for Leah’s speech and language development in these early stages, bilateral hearing aids have been prescribed. The Audiologist recommends fitting them by the time she turns six months old. However, the financial burden of the hearing aids and the costs associated with the numerous tests conducted pose a significant challenge.
‘Leah has been wearing demo hearing aids for about two weeks now, and we’ve seen incredible progress. Once we have the funds, she’ll get her permanent set programmed. In the beginning, she struggled a bit with adjusting to them, sometimes feeling overwhelmed and overstimulated. But lately, we’ve noticed a positive change. She’s gone from being quiet and cautious to laughing and chatting more when she’s wearing hearing aids.’ – explains Leah’s parents.’ explains Leah’s parents
Quotes ranging from R35 190 to R53 705 for the hearing aids have added financial strain, leaving Leah’s family uncertain about covering the testing fees. This has led the family to set up a crowdfunding campaign on BackaBuddy with a target of R372 462 of which they have already raised over R2 500 with the help of 6 amazing donors.
Pictured above: Baby Leah at her first Christmas photo shoot with mum Mandy, dad Peet, and sister Mialeigh
Their aim of this campaign is to raise the necessary funds to provide Leah with the hearing aids and cover the costs of the tests.
‘Thank you for taking the time to read Leah’s story. We’re grateful for any support you can provide. Together, we can make a real difference in Leah’s journey to better hearing. Whether you’re able to contribute financially or not, every bit of support means a lot to Leah and our family. With the demo hearing aids, Leah has already made great progress, and your generosity can help her continue to thrive. Your support will not only contribute to Leah’s hearing journey but also serve as a testament to the kindness that binds us as a community.’ they conclude.
UPDATE:
As Leah’s first birthday approaches, her family is filled with both hope and urgency. Recently, they discovered that Leah’s hearing on her left side is much worse than initially thought, making a cochlear implant an essential step for her development. The procedure, however, comes with a significant cost of R373,000, and the family is determined to raise the necessary funds in time for this life-changing implant.
Next month also marks Deaf Awareness Month, a time that holds special significance for Leah and her loved ones. They dream of celebrating her first birthday by giving her the precious gift of hearing, allowing her to experience the world in a way she has never known. The journey has been challenging, but with the support of the community, Leah’s family remains hopeful that they can reach this goal and provide her with the chance to hear the laughter, music, and love that surrounds her every day.
