21/12/2020
My name is Thato Ramoshaba mother of Khumo Ramoshaba.
On the 18th of October 2020, I was blessed with a baby boy. Upon delivery it was noticed that he was having trouble breathing and was later put on a ventilator. After further investigation it was discovered that the baby suffers from Congenital Central Hyperventilation Syndrome which is an extremely rare breathing disorder where the baby shallow breathes when in deep sleep, therefore needs extra oxygen, however the baby can breathe when awake and active.
The family consulted with two hospitals that both confirmed the diagnosis, we were further advised of the following options;
1. Home ventilation which will mean the baby will be discharged to the care of the family, he will need a ventilator, saturation machine and a suction. The family will be trained to care for him or a nurse can be hired, all this would come at the cost of the family.
2. The baby can be cared for at the hospital, however the ventilator would be removed, and should he not be able to breath on his own no attempt to resuscitate him will be done.
The family informed the hospital that they are opting for home ventilation, which the hospital accepted and offered to care for the baby while the family arranges for ventilator and training thereof.
It is against this backdrop that we humbly request any financial assistance that can go towards the purchase of the ventilator at a cost of R200 000.
We may not have the financial means to home Ventilate but we would like to exhaust all possible options to ensure we keep baby Khumo alive while also praying and trusting God for a miracle.
I hope you find the above in order.
Your support,prayers,donations and sharing this message will be appreciated. Warm Regards Mama Khumo
