Good Morning Angels: Helping a four-year-old with rare genetic disorder
Four-year-old Lukas van der Walt was born with LMNA, an extremely rare form of congenital muscular dystrophy - the only recorded case of its kind in South Africa!
Four-year-old Lukas van der Walt is a living miracle. His parents, Tjaart and Lize van der Walt struggled for eight years to fall pregnant. On 10 June 2019, Lukas was born, but the joy of his birth, quickly turned to distress for his doting parents and the doctors at the hospital.
It took around two months in NICU before a diagnosis was made. Lukas was born with LMNA, an extremely rare form of congenital muscular dystrophy - the only recorded case of its kind in South Africa! It is a degenerative genetic disorder that destroys his muscle tissue over time.
At birth Lukas could move his arms and legs, now he only has movement of his feet and thumbs. His diaphragm is also dysfunctional and he is assisted to breathe with a ventilation machine, though a tracheal stoma (hole in the throat).
Good Morning Angels: Six-year-old sells jewellery to help grandma
His mom, Lize says his mind is wide awake and he communicates very clearly when he enjoys himself and when not. He loves being outdoors and doing activities with his parents, so they take him jogging, cycling, walking the dog, as much as they can, in a special stroller that can carry his life-giving machines.
"He wants to move, and he knows he cannot move, but if you can move, he can move. It almost becomes your responsibility to move because you can,” says Lize.
Looking after Lukas is a full-time responsibility. His grandparents help during the day while Lize, a hairdresser and Tjaart, in the tourism industry, work during the day.
When Covid-lockdown hit a few months before Lukas’ first birthday, both his parents we struggling to work. They were assisted by their family and members of the community. That’s why they also started the Little Lighthouse Foundation, to raise funds to look after their special miracle boy and also to shine a light on his very rare condition.
This coming weekend more than 70 runners - most of the novices - will participate in the Two Oceans Half Marathon to support Lukas and the Little Lighthouse Foundation.
Good Morning Angels: Local flower seller Johannes Qambelisha gets a car
One of these novices is Peet Grundling, who wrote to Good Morning Angels on behalf of Lukas and his family.
Peet will be running for a new stroller for Lukas, and he’s already raised R35 000 of the R50 000 needed for that. But, the family also needs an inverter and batteries to keep Lukas’ breathing machine going through the longer periods of loadshedding - as he cannot breathe on his own.
REQUEST FOR: Lukas, Lize and Tjaart van der Walt
REQUEST FROM: Peet Grundlingh
ANGEL 1: The Good Morning Angels Fund NPC
SPONSORING: The GMA Fund will match the donations raised so far by Peet for little Lukas, with a donation of R35 000 towards his stroller and other needs
ANGEL 2: Kobus du Plooy from Rendev Property Group
SPONSORING: Kobus and his associates in the construction industry will assess the Van der Walt’s power generation facilities and assist them with the best top-up solution to keep Lukas’ vital breathing equipment going during prolonged periods of laodshedding and power interruptions.
Good Morning Angels: Assisting animals in need of much-needed love
ORIGINAL REQUEST:
Dear Good Morning Angels,
I decided to enter for the Two Oceans half marathon on 16 April 2023. I entered my name and was lucky to be drawn and got an entry. I browsed through the charities for interest’s sake and the story of Lukas van der Walt caught my attention.
I believe every person needs a chance in life, especially children, but not all have the privilege of being afforded that chance. As part of my “pay it forward” belief, I decided to run the Two Oceans Half Marathon for Lukas, now almost four years old and the Little Lighthouse Foundation, to raise funds for this little boy and help his parents with the challenges and hardship that they as family experienced since June 2019 when he was born.
Tjaart and Lize van der Walt waited eight years for their little miracle, Lukas who was born on the 10th of June 2019. When he was born, they could immediately see something was wrong. He was taken to the NICU, where he was put on life support. Doctors were baffled as they never saw something like this before. After two months of life support and many emergencies, they finally got a diagnosis: Lukas has CMD (congenital muscular dystrophy).
Doctors thought they would never leave the hospital but after a very long and hard 5 months, they took Lukas home. Lukas had to get a trachea and a feeding tube because he cannot swallow or breathe on his own. Tjaart, Lize and Lukas went home with a massive responsibility, scared and uncertain but ready for the challenges on how to support and raise Lukas.
Then COVID became part of our lives, his mom Lize (hairdresser) and dad Tjaart (tourism industry) could not work and earn any income and were totally dependent on friends and family for assistance/donations just to get through every day during this period.
Even though Lukas’s brain is normal, he does not have the ability to move, swallow, talk or even cough, he is on a ventilator 24/7. Lukas has a huge personality - his smile will absolutely steal and melt your heart.
Lukas is dependent on his medical machines (ventilator, suction machine etc.) that require 24 hours electrical power. The biggest challenge at this stage is to manage and cope with the load shedding schedule that is currently happening in South Africa. They do have an inverter with batteries, but it is not sufficient to maintain his machines for the duration of a four/ six-hour load shedding time slot even if they are fully charged.
Lukas is growing fast and as he develops, so do his needs. He has outgrown his special stroller to carry the machines and their batteries when his parents take him for outdoor strolls which he really loves, he will soon also outgrow his special car seat.
As far as known, Lukas is the only child in South Africa, on captured data, that has this life-threatening disease. I don’t know what the future holds, but I do believe his life is a blessing - not only to his family, but everyone around him.
The following inspiring words of Lize, Luka’s mom” “We love Lukas just the way he is. We accept him for who he is, and we would not want him any other way. My son has taught me more in the last 4 years than I could teach him in a lifetime. When I look at Lukas, I see hope, I see Light and I see purpose!! Day to day with Lukas involves a lot of emotion and we still cry, but we know that we are never alone and that we will give Lukas the full life he deserves! We look at the future without fear but with great curiosity!!” - this made me realise that I had to make a difference in this little boy’s and that of his parents lives.
Tjaart and Lize face this adversity with their heads held high and their feet grounded and really need support for their little boy. Lukas’s life may be short but is filled with wisdom and covered by grace.
I entered “back a buddy” to help raise much needed funds which will go towards a very needed stroller, additional inverter batteries and generator, but it will not be enough. There will be shortfalls of about R20K for the stroller and R50K for the additional batteries and generator. Then there are also additional monthly costs such as additional medical expenses, the carer who look after Lucas during the day when Tjaart and Lize are at work, he is on a special diet and the cost of his special milk per month is astronomic.
Feel free to follow the link below to Lukas’s Facebook page to see what his life is all about as well as The Little Lighthouse Foundation https://www.facebook.com/littlelighthousefoundation or https://www.facebook.com/littlelighthousefoundation/videos/230221678318377/
My mission is to take this boy’s story to all the corners of the world to assist, and being afforded a change in life ever since as the cost for looking after a disabled child is enormous.
I truly stand on the shoulders of giants, thank you for taking the time to read his story and for considering my plea for assistance for this little boy, it is much appreciated!
Be Blessed.
Peet Grundlingh
Tune in to the 'Breakfast with Martin Bester', weekdays from 06:00 - 09:00. Stream the show live here or download our mobile app here.