Join us for a fun 5K walk or run on May 3, 2025, to support two brave fighters! By participating for just R80, you’ll help Tumour Girl(23) and Heart Boy(14) receive the medical care they need.
Both of these incredible young individuals have powerful stories of strength and faith despite their struggles. Below is a brief overview of their journeys, along with a link to read their full stories. Please be aware that Tumour Girl’s story may be upsetting for some readers, so proceed with caution if you choose to read it entirely.
HEART BOY: On the 6th September 2010, Daniel was born with a congenital heart defect known as Interrupted Aortic Arch and Arterial & Ventricular Septal Defect and Hirschsprung’s Disease. Our son had his first 7-hour open-heart surgery when he was just 7 days old. Ten days later, he had a Plication of his diaphragm, which shifted due to the heart surgery. Ten days later, he had Hirschsprung’s repaired. An unplanned, ten days later, he needed his first surgery repeated, which was the repair of the collapsed aortic arch. He stayed in the hospital from birth to 3 1/2 months old.
At four months old, after being home with us for just over 3 weeks, I rushed him back to the hospital as he came down with bloody stool and bloody vomit. I will not forget the 13th of January 2011, when doctors worked on Daniel around the clock, not knowing what to do with this tiny little body bleeding profusely. And then the doctor came out of the ICU, telling me to come and say goodbye to my boy, as they don’t know whether he will make it through this time. Daniel lay lifeless, and I had to say goodbye to my son.
They wheeled him into emergency surgery at 04:30 am to remove a duodenal ulcer. Drs at that point told me that they are not sure what the outcome will be because he had undergone so much surgery in the first 4 months of his life. But they will do everything that is needed to save his life. By a miracle, he was saved, but it was far from over! Heart Boy is what doctors call a miracle child, he fights daily to stay alive…to learn more about him, please click the link.
TUMOUR GIRL: Angel was put through many unnecessary tests around September 2023, only for them to misdiagnose her in the beginning. And when I say unnecessary tests, let me explain, never mind the medical neglect from the first hospital… (You will need to follow the link to learn more about this.)
The next day, my daughter was worse, but I refused to take her back to the very hospital that was not listening and doing medical tests on her chest that weren’t necessary. So, we went to another hospital and asked for help!
My daughter was so bad when we got there that they immediately took her straight to the RESUS ROOM (terrifying moment as a mom to watch this) and put her on machines and drips to monitor her and make sure she didn’t go into a coma. The DR agreed with me and said he also felt strongly that it was not meningitis as it only showed traces, which should have made the other DR do a HEAD CT, not a chest one, which also confused this DR on why that was even done!
Within 20 minutes of the head CT, they found a tumour. They then ordered an MRI for a better view, got hold of the head of neurology, and ordered further blood work. Within 24 hours, my daughter had around 9 DR from Neurology and Endocrinology and was admitted to HIGH CARE. (ICU) Where the tumour was situated was the reason for the eyesight loss; they were working on shrinking it to get her eyesight back at this stage.
However, there was permanent damage done to her pituitary gland, due to the tumour… My daughter has lost the use of her ADRENAL GLAND. Has damage to her KIDNEYS, can’t have children due to the damage, and has DIABETES INSIPIDUS. (Didn’t even know there was diabetes like this) I will never know if this permanent damage is due to the medication they gave to treat Meningitis, which she never had, or if too much time was wasted on doing the wrong tests, or if it is just due to the tumour all on its own!
She has meds at 6 am, 8 am, 1 pm, 4 pm, and 6 pm every day. All I do know is she will be on medication for the rest of her life with a high chance of getting Diabetes 2 and Cushing disease, kidney failure, and we are to watch out for seizures. We were told that if she starts vomiting and can’t take her daily meds, we are to immediately bring her to the ER and have her admitted, as her body can’t function without the meds and would need them to be given via IV, and to always wear a medical bracelet. To jump ahead, these are the latest updates to shorten the story here.
UPDATE: On Friday (6th September 2024) Angel was rushed to the ER again and immediately taken to the RESUS room, the DR’s had to try go in the neck (Carotid artery) and when it was unsuccessful they went through her private part/groan ( Femoral artery) to stop her from going into a coma/organ shut down to place tubes😞to administer fluids and drugs…She has been taken to the ICU (high care) and is waiting for Neuro + Neurosurgeon + Endocrine to decide a way forward.
UPDATE: Angel was released from the hospital a week later (Friday, 13th September 2024) back into her mom’s care. She has been put on more meds and is to be monitored until her next appointment, only in December 2024. In short, they still won’t operate to remove the tumour or try any other treatment other than monitor the tumour and how Angel is with the meds.
UPDATE ON ANGEL: 30 October 2024 – Angel was diagnosed with Addison’s Crisis in addition to her other health issues. 🥺 She is scheduled for her next MRI on 29 November 2024, followed by a doctor’s appointment on 5 December 2024. (WHAT IS ADDISON’S CRISIS: Addisonian crisis, also known as adrenal crisis or acute adrenal insufficiency, is an endocrinologic emergency with a high mortality rate secondary to physiologic derangements from an acute deficiency of the adrenal hormone cortisol, requiring immediate recognition and treatment to avoid death.)
UPDATE 23 December – Angel was discharged from the hospital and is now PANHYPOPITUITARISM. (Panhypopituitarism is a rare condition that involves a lack of all the hormones your pituitary gland makes. These hormones are essential for several different body functions.) BUT is still hopeful and trying to fight daily!
To read more on both Heart Boy and Tumour Girl’s story, you can click this link: WHO WE ARE HELPING | Give A little love
So, PLEASE, if you are keen to help these 2 fighters, consider taking part in the fun run/walk and come meet them face to face, while enjoying some yummy stalls and meeting new people. You can also help by sharing the event and asking friends, family even a stranger to come take part and or share the story too.
HELP US REACH 1000 PEOPLE TO TAKE PART!
For more info or to sign up. Please click here: 5K FUN RUN 3RD MAY
