The scent of incense sticks filled my nostrils as I stood in the modest wendy house that Nashrullah Leonard rents in her mother-in-laws backyard in Belhar. She was overwhelmed to see me and ushered us to sit down on the seats that she quickly cleared out to make our stay in her little home comfortable.

The 34-year-old is a mother to three beautiful girls, Nishaat, Aaliyah and Jehaan. However, her journey through motherhood is constantly tested with her youngest born, Jehaan. Nashrullah stood at the door as she held a restless Jehaan.

Jehaan is two and half years old and has faced a mountain of health challenges since she was born.

Jehaan is no ordinary looking child. While a typical two year would be running around the house scratching out the kitchen pots and pans or mouthing any word they hear, Jehaan is like a 6 month old baby. Her head is larger than normal and she has dark marks on her face.

Jehaan has Sturge-Weber syndrome (SWS), a rare disorder characterized by the association of a facial birthmark called a port-wine birthmark, neurological abnormalities, and eye abnormalities such as glaucoma.  The other symptoms of SWS are an abnormally large head and an overgrowth of certain soft tissues underlying the birthmark and lymphatic malformations.

“Another symptom of the Sterge Weber is the fact that Jehaan also gets seizures. My child also has osteoporosis because she lacks vitamin D as well as rickets disease,” Nashrullah explains, adding that at one stage, Jehaan was hospitalised for four months in the intensive care unit.

“We all have bone marrow but my Jehaan doesn’t have any. She has been for regular blood transfusion but the doctors have now said that she needs a bone marrow transplant and that will only be possible when we raise the funds for the transplant to happen.”

She kneeled down in front of the chairs we occupied to feed the little girl. Jehaan has an enlarged spleen, liver and brain. After insisting that she takes the seats we occupied to feed Jehaan, Nashrullah’s husband Tashreeq Jansen, who reverted to Islam a few years ago, joined us. He is currently unemployed with no support from his family. He says they have ostracised him since he accepted Islam.

“My family has not accepted the fact that I am now a Muslim and because of that we do not get any support from them,” he says.

Tashreeq has relentlessly been applying for work but with no success.

“I want to help my family. In fact when Jehaan was born and we had to be at the hospital so often I had to leave my job at the company I worked for then because the manager didn’t understand,” he says.

The family remains financially constrained. Nashrullah tells us that she sometimes makes the arduous trek to Tygerberg hospital by foot for Jehaans treatment. She says taxi drivers charge exorbitant prices and take advantage of her desperation. Nashrullah’s only form of income stems from the disability grant she receives due to a hip ailment.

“We don’t have much; I only get my disability money and the children’s social grant to run us to through the month. I owe my mother money and a money lender. I can’t even find work because of my disability and everything you see here isn’t mine,” she sighed.

Looking around the humble wendy house, my eyes fell on a mattress which had no base. Next to that there was a cupboard with few items of clothing. Separating the kitchen from the “bedroom” was a curtain. In the kitchen area is a stove, a very old radio and containers filled with Jehaan’s medication.

As I looked up at the fridge I saw smoke and alerted Nashrullah. As I leaned forward to investigate, she smiled and said: “No it is incense stick, the drain is just outside and the bathroom doesn’t smell nice. That’s why I have to burn this all the time.”

Jehaan hardly gets a good night sleep as she struggles to breathe, which further drains her mother.

I stroked Jehaan’s cheek and she smiled back at me. I noticed how despite being nearly three, her chronic condition made her appear more infant-like. She cannot speak or walk. While wiping away the drool from Jehaan’s mouth with a tattered face cloth, Nashrullah speaks about Jehaan’s diet.

“I have to prepare two pots of food. Jehaan only eats mashed vegetables. There are times when we don’t have anything to eat and I would have to send my children to ask our neighbours for a slice of bread. I recycle clothing from the eldest to the youngest but that isn’t always easy. Aaliyah wears Nishaat’s old clothes but I can’t keep clothes for Jehaan because she is built differently,” Nashrullah, said as she fought through tears.

I stepped out of the wendy house to take photos and immediately noticed a makeshift pram. Tashreeq says when they walk to hospital it is a challenge to carry stuff for Jehaan so they got innovative by creating their own buggy.

Despite being the hardship and daily challenges, Nashrullah is amazingly strong and optimistic. They are a close knit family and support each other. Nashrullah says although family and friends may have forgotten about them, they have faith in their Creator that things will become easier.

“We have to be strong for Jehaan. Everyday is a challenge but we have to accept it. I love my family and I will do anything to keep them safe and happy.” VOC (Najma Bibi Noor Mahomed)