I am Lulama Sifuba, a 45 year old mother of an Angel and two older children.

My last child Zenande (Zenney) was born on the 1st November 2016 at a government hospital in Gqeberha. She weighed 2.8kg and was born with Down Syndrome and 3 defects in her heart.

Despite many challenges and open heart surgery in 2018, she managed to pull through. During her young life she was on constant medication and had to endure hospital visits on a monthly basis.

She had appointments for: Cardiac, Physio Therapy, Speech Therapy, Genetic Clinic and Dietician.

Regardless of the fact that she could not walk or talk, she was full of life. She had a beautiful smile and was pleasant most of the time.

2018 was her first heart operation. We stayed in hospital for 3 months. I was very scared to leave her bedside. Afraid of losing her. Afraid of not knowing what the next step would be.

2019 She battled a great deal with health issues, and

2020 was a nightmare. She developed Covid and the government hospital where she was born had no room for her to stay. I had to nurse her at home. Once again, we were in and out of hospital and after Covid she did not get back to her old self.

During September 2020, Zenney developed complications with her heart. The Cath Lab that was needed to diagnose the extent of her weakening heart had been out of order for two years at that stage. Since September 2020 up until January 2021 I had to go to the hospital to check whether there was any help available for my baby. I did not have the money to take her to a private doctor or a private hospital. Since her birth I had to leave my job to take care of her and in the process we lost our cars and our home.

In November 2020 the cardiologist gave me an appointment to come back on the 18 Janaury 2021, but on the 16 January 2021 Zenney got so sick that I had to call an ambulance. The ambulance service told me that they do not come out into the area where we lived, during the night.

I prayed the entire night for my little girl and could not wait for the break of day. On the 17th January I took a taxi with my very sick child, to the hospital. When I got to the Outpatients section I could see that my child was starting to slip away and ran with my child to the ward where she was usually treated.

At the ward it took them two hours to attend to my baby. By this time I could see my child slipping away. The colour of her skin was turning dark and I had a feeling she was starting to leave us. By 4pm I told the doctors that we were losing her and I could not believe what I was hearing but the doctor told me that they had no bed for her in ICU and the oxygen she was receiving was not enough as it was not reaching her brain.

By 2am the following morning I desperately asked the doctor to assist as the situation was now beyond overwhelming. Due to the bed space there was nothing they could do. By 6am they came to fetch her from my arms to take her to ICU and I told them that I witnessed her passing, and no one was paying attention to my cries. They insisted on taking her to ICU and withing two minutes of her being on the bed. They confirmed that she had passed.