A lifetime of battles added to the past 14years road of hospitals.
Hell started at age 14 when my father passed away of cancer, leaving my mom with 5 kids to raise, of which I was the eldest raising the youngest 2 brothers aged 3 & 7. I was raped and badly abused for 5 years from age 15, with my mom often watching and telling me I deserved it. I was often locked out, leaving me to sleep in the cold and rain for months. Born without a hip the man-made hip lasted from age 2 to age 30. After 2 strokes & 3 heart failures, it leaves me unable to have major surgery, so I’m battling to walk. I’m divorced from the girl’s dad after many years of being separated. Hospital stays were just too much and broke our family apart.
My 2 daughters 14 (Charné) & 5 (Reani) had a bad start in life, due to my heart failures during their births. Reani was cut off from oxygen for 20min. Both kids share the same genetic disorder unique to the combination of 2 bad genes of their dad and me.
Charné was 1st admitted to hospital at age 3 month’s & constantly every few weeks for between 5-14 days per stay. She spent her 1st 7 Christmas’s & New Years in the hospital. In 2009 her lungs collapsed and after 2 months of praying with Doctors preparing us for the worst, her dogs gave her the will to fight to live. Her life consists of loads of chronic medications, having to wear a mask to filter airborne viruses to keep her as healthy as possible, having a compromised immune system and major list of allergies, limiting what she can eat and do. Sports cause her lungs to bleed. She had a major stomach operation which has to be redone regularly in her life, but this won’t fix her health, merely limit the damage to the stomach. Her esophagus was already reduced to 10cm due to being badly burned to prevent cancer. She also has a double anterior web growing in her throat, making eating a battle and will cause her to be unable to eat solids until she suffocates. These growths will have to be removed via regular operations, as it always grows back. She already choked a few times, which adds to her major depression. She was hospitalised 6 times and to the theatre in 2017. She started 2018 being badly ill, with ulcers in her mouth throughout her digestive system. She lost a lot of school work because she was in the hospital most of the time, yet she is very dedicated to her studies, often catching up on school work whilst laying in hospital beds with a drip in her arm. This dedication earned her an academy award in 2017. She has also been diagnosed with Irritable Bowel Syndrome 3 weeks ago, adding to this list of health problems, making things even worse.
Reani’s was in out of the hospital from the age of 6 weeks, where the genetic disorder was diagnosed as both kids share the same issues with their stomach & lungs, known at the time. She stopped eating and growing altogether. She spent a total of 9 months in hospital in her 1st year of life. There were many theatre procedures, biopsies, surgeries and the insertion of a micki stomach tube for her to be fed through her stomach, brain scans as she stopped breathing for 4-7 times a day with foam coming out her mouth having to be resuscitated. She also had the same stomach operation as Charné. We were transferred home with 24/7 nursing care for which the medical aid only assisted a few months, thereafter our monthly expenses amounted to R70000+ per month. After 30 months the costs reduced to R45000 per month employing private nurses rather than the agency. All these expenses had to be paid cash, sourced from credit cards, personal loans, mortgages as fundraising events that took up to 3 months to organise, only raising approx. R20 000 if we were lucky. We had no family life and Reani was home, but never part of our family. She suffered from food aversion due to chronic esophagitis being so severe, malabsorption, osmotic diarrhea when overloading the intestine, and lately with her eating therapy, she bloats as the intestines don’t push the stools out at all, so she was admitted 6 times since May 2017, once again for her intestine to be flushed as stools rotted and went toxic inside of her leaving her very ill. The gastric hormone over produces acids controlled by multiple types of medications. She has a compromised immune system, leaving her with chronic antibiotics taken 3x per week since birth to keep her as healthy as possible. Brain hormones leave her dehydrated, shortage of oxygen and volatile sugar levels spiking to 23.9 and dropping to 0.1, yet she’s not diabetic. Both my girls are asymptomatic, so they’ll smile with a fever of 42+, not the usual crying sick child you would expect. Reani’s super intelligent and a caring, friendly child, who just wants to play and make friends. She is in Grade R this year and 10 days into the new school year she’s already been back to the hospital. She has now been identified as being underdeveloped which is no surprise considering her isolated life to date.
For 4 yrs I’ve only slept 90min per night taking care of the girls, working full time to keep a roof over our heads, whilst trying to find help just to survive each month. The trauma of so many times standing on the brink of losing my baby and minimal sleep took its toll and I’ve been diagnosed with 2 autoimmune conditions, adding to my pain and mobility problems. Eventually, I’ll be completely disabled. My biggest fear is leaving my girls, as I don’t know who or how they will be cared for being a single mom.
Reani’s care has put us in such bad financial space that we’re under debt review and almost lost our home in October 2017. After paying the installment to cover past loans, I’m left with R2300pm which I have to pay for water & services, electricity, food, petrol, accounts, schools, all the extras needed for the kids like school events, etc. Not even thinking about medications averaging between R7000- R10000 cash, or Drs consultations not paid by the medical aid. We sit with R1 750 000 debt, with further monthly expenses and needs putting me further into more debt and unable to care for my daughters. Without major help or rather a huge miracle, I will lose everything, but more so our house which is the only security the girls have, and I won’t have any means to pay for another place to stay either due to this debt.
The house is slowly deteriorating. The roof is leaking, as it needs paint to seal the clay tiles, the ceilings need to be vacuumed as it affects their lungs BADLY. They can’t go outside as it’s only sand and dust which is poison to them, the security gate can’t open anymore, Reani’s aircon unit to help with dehydration was taken for repairs and never returned. We live in darkness inside the house as the windows can’t open or shut properly. The washing machine works only at times. The wooden floors are worn and is a breeding space for germs and so much more. All this needs funding to provide a safe space for the girls to have a life!
Even though they look so normal from the outside, they are ill on the inside, yet throughout their pain and illnesses, they always smile and stay as strong as they can. I get my strength from my girls to carry on because they don’t give up.
I so badly wish I could give them something to make their life better. Being able to survive monthly and having to plea for help literally daily, and being at the mercy of those around you for something as basic as electricity or water and food, not being able to help yourself no matter HOW HARD you work, breaks one’s spirit. It has increased the pain I’m battling with and adding to the burden on Charné being the eldest, as she has now become my hands to do lots of the household chores, which I can’t do anymore. She should be a child, but can’t be. My heart breaks for my daughter as she too now has to grow up sooner, like I had to at her age, leaving her with no carefree childhood.
If there’s ANY help, anyway, just a miracle – our OWN miracle!
God knows we need angels to help us too:
1. Clear past care debt of R1,750, 000.
2. Survive monthly @R50 000 to have the care they truly need.
3. Fix the house to make it safe for them to move around and not be stuck in their rooms.
And somehow make provision to care for them when I am too ill to do so myself.
Thank you for caring.
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