Yazdaan Ally has recently finalised his book in which he tells his life story through pictures. The book mirrors the problems that parents and children, who are suffering from rare diseases, are going through. Pictures: Nigel Sibanda
A Johannesburg teenager, who survived several life-threatening diseases, is now an artist of note who uses his artwork to raise funds for poor children whose families cannot afford medical bills.
Soon after he was born, Yazdaan Ally, 15, from Kensington, was hospitalised on several occasions.
This included when he was admitted in hospital for the removal of a vascular tumour known as arteriovenous malformation, which was on his right thigh.
At the age of four, he was diagnosed with epilepsy and was treated for it and later he got pneumonia and his right upper lung collapse.
At the age of six, he was diagnosed with autism and soon after that he was diagnosed with a congenital heart defect.
Despite all this, Ally has recently finalised his book, in which he tells his life story through pictures.
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The book mirrors the problems that parents and children, who are suffering from rare diseases, are going through.
It aims to encourage and educate children and parents to emulate how his family managed to overcome the anxiety of dealing with having a family member who is suffering from different uncommon diseases.
It is also part of his advocacy work in which he raises funds for his medical bills and also for other children who are in a similar situation.
“The book tells the story of a mother whose child has been diagnosed with a rare disease,” says Ally.
“It gives details on how the family dealt with the pain of finding out about the child’s condition and how they managed to address all the challenges until they decided to educate the public based on their experience.
“I am currently looking for a company that can assist in publishing my book,” he says.
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“Drawing inspires me and it makes me so happy when I have a bad day.”
Ally started drawing at the age of six and it was his only form of expressing himself as he could not communicate properly at the time due to poor health.
Apart from his photo book, Ally has different products such as sneakers, T-shirts, hoodies and other related things depicting his drawings.
Some of his products called AVM Warrior Hampers, which comprise different gifts, are already being distributed by his mother to needy children.
All the proceeds will go to his medical bills and also be donated to other children who also have medical problems.
He recently founded a non-profit organisation known as AV Malformation Warrior, which sells things to the public.
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The NPO’s aim is to collaborate with other stakeholders and promote his artwork-oriented products to raise funds for medical bills.
The artist is a Grade 8 pupil at School of Achievement, a remedial school in Germiston and he lives with his parents and two siblings.
But he has not yet enjoyed his first year in high school because since January, he has been in and out of hospital due to health complications caused by arteriovenous malformations diseases.
His mother Shoneez Ganie is excited about the initiative to sensitise the public about issues relating to rare diseases.
“When he was young he was expressing himself through drawings as he was unable to communicate properly how he was feeling,” says Ganie.
“Other families are lucky because Yazdaan and I have taken the initiative to educate them.
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“For us it was difficult because there was no-one to lead us.
“We just had to teach ourselves how to handle this issue.
“He also produced a colouring book which is already being donated to affected children.”
Ally’s twin brother died a few days after he was born.
“There were days when it was physically and emotionally draining to look after him, but I never gave up,” says Ganie.
“After I found out that I was pregnant, he was born prematurely at 34 weeks.
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“I had an emergency caesarean section and when he was born he weighed 2.1kg.
“Soon after he was born, he stopped breathing and turned blue, indicating a lack of oxygen.
“He was then transferred to the intensive care unit where he was treated.”
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