“Our hearts were shattered when he tried to speak or cry and no sound came out. I must have cried over a million tears, I miss his voice.”
These were the words of Pascale Engelbrecht, mother of two-year-old Rainhardt, who was diagnosed with bilateral multi-cystic dysplastic kidneys at birth and now is battling a mineral bone disease.
The disease has caused abnormal growth on his face and has damaged his nose and nose airwaves. This caused Rainhardt to struggle to breathe and there were moments when he even stopped breathing.
He had to undergo emergency surgery for a tracheotomy on May 12 at the Nelson Mandela Children’s Hospital.
During his recovery from the tracheotomy surgery, Rainhardt picked up an infection that he had to be treated for and also receive a blood transfusion.
He had to breathe on his own without the aid of oxygen before being discharged on June 7.
The damage on Rainhardt’s face is irreversible, but he is being treated for the disease to stop it from progressing.
“The way he grows might change his facial structures, but if not, reconstructive surgery might be an option in the future, after he has a kidney transplant,” said Pascale.
Rainhardt’s journey for kidney dialysis began on May 19 last year with the insertion of his PD and hemodialysis catheters.
To qualify for a kidney transplant he needs to get to his goal weight of 10kg. The toddler currently only weighs 8.2kg.
Since his return home after his tracheotomy surgery, Pascale said: “It is a challenge. We cannot hear when he cries, calls us or even when he stops breathing. At the moment he points when he wants something and shakes his head ‘no’ when he does not want something.”
She said they are in the process of seeing a speech therapist to look at options for him to communicate better.
Rainhardt has to be supervised at all times.
Rainhardt is monitored in the evenings when he is in bed with a little oximeter, but he tends to kick the monitor off his foot.
Between Pascale, his father Daryll and Aunt Siobhan Fourie, shifts have been set up to ensure someone is with him the whole time.
“We really miss his voice, before the trachea he was becoming more verbal.”
She explained that even a simple trip to town or an outing requires them to take a suction machine and UPS inverter with them.
“Because of secretion build up (mucus), the suction is on demand and can’t be timed. We have to keep the area clean. We change and clean the trachea every morning in a sterile room,” said Pascale.
Although Rainhardt is on medical aid, not all medical expenses are covered.
He has to see a neurodevelopmental-trained physiotherapist in Johannesburg weekly and accommodation and travel costs have been mounting up.
Because Rainhardt loves Minions so much a family member Charmaine Greyling began a Minion drive.
For more on the Minion drive and Rainhardt’s kidney journey go like and follow his Facebook page: Baby Rainhardt’s Kidney Fund.
You can also support his cause through BackaBuddy: https://www.backabuddy.co.za/champion/project/rainhardt-engelbrecht. Or through Paypal: https://www.paypal.com/paypalme/babyrainhardt? to assist with all the extra medical costs that keep pouring in.
