Crazy load-shedding schedules and unplanned and heavy power outages that take days to resolve are causing increasing stress for the Nel family in Robin Hills.
Couple Alexa and Martin Nel explained that they sleep and wake up every two hours to check if the power is still on and that their seven-year-old son Marno’s ventilation and oxygen machines are still functioning accordingly.
Marno is a twin, who lives with a disability. He was born with chromosome deletion MEFC2, which caused severe delays in mental and physical development. He spent the first 14 months of his life in hospital, where he received his tracheostomy and peg when he was only two months old.
Alexa explained that during his hospital stay, he experienced numerous lung infections, and airway trauma that caused many setbacks. “He was over a year old when he was discharged, and he came home with the oxygen machine. He suffered a few oxygen losses in hospital, and he was diagnosed with severe hearing loss due to prolonged ventilation.”
She added that he improved a bit at home with his oxygen machine and full-time nursing. The physio came in every week because he could not sit upright and hold his head and communicate but he improved.
Marno experienced a stroke in 2019 as a result of septicemia. He suffered a setback and was placed on a 24-hour ventilator due to his lungs collapsing during exhalation.
“Being on the ventilator made him a happier child. Because before he would cry, and you would not hear him. He has been much better, but his lungs are not really improving but are also not worsening.”
The batteries, which serve as a backup power system and have repeatedly saved Marno’s life, were donated by their family. But because of the frequent, extended power outages, the batteries’ lifespan has decreased, and they now only last two hours.
If the power went out, the batteries could keep the machines running for nine days, but they are now losing capacity and only last about two hours. His ventilator has an 8-hour battery capacity, whereas the oxygen does not have one; instead, they use a portable two-hour battery.
“We have a generator, but petrol is extremely expensive we cannot afford to run it the whole night. In the past week, we experienced numerous outages, of which one was over 48 hours. This means we have to set alarms for every two hours to check on the backup batteries; when they are depleted, we switch Marno over to portable machines, which also only last for two hours.”
The backup power they have is a 5kw invertor with eight batteries. Marno’s father Martin explained that the batteries are not the new lithium batteries, they are older, and their cycle is done. They now last for about two hours.
“I have found a lithium-iron-volt battery that has a 44-volt supply that one battery can replace all the others, it will be sufficient to last for Marno for more than 12 hours. We need R33 000 to purchase it.”
Alexa explained that for a generator they spend about R1000 on petrol to keep the machine powered.
“The issue is not only money but also the stress of not sleeping, we have to keep listening for alarms and also we know that the battery life will keep depleting. The wait for the load-shedding, the stress of not knowing if the power is going to come back and when to expect outages is very stressful.”
The family added that any contribution to help get Marno would be highly appreciated.
To help Marno contact Alexa Nel at alexak46@gmail.com for more information.
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