FS mom’s plea for help with children with rare diseases

close up of parents and child hands

Six years ago when Lerato Madumise, 28, of Rammulotsi in the remote Free State town of Viljoenskroon found out she was expecting her first child she was happy. She was excited about giving birth to a healthy boy, and everything he would grow up to be. 

Madumise’s hopes were dashed when her son was born with a rare condition called anophthalmia. This is a rare developmental disorder that results in babies being born with no eyes. Madumise’s son has the condition in both eyes and was born blind. His father left the family soon after he was born. The boy was also diagnosed with autism.     

Four years later she gave birth to a baby girl. The baby was also blind, and diagnosed with bilateral microphthalmia, a condition where babies are born with small eyes.

“I learnt that the cause for both of them being blind is a rare genetic disorder  that is caused by a single gene. At first I was shy and not good about it. This is new to my family, no one has a similar condition,” Madumise tells Health- e News. “But I had to accept my kids’ conditions and be there for them.” 

Providing for special needs 

Taking care of children with special needs is extremely challenging. 

“It’s hard to raise children like them. One can’t  talk and doesn’t have eyes, he can only hear.  He is totally different. Sometimes I don’t understand him because at night to him it’s like during the day. He doesn’t sleep at night, he gets hyperactive. But during the day he sleeps as if it’s at night,” Madumise explains. 

She needs to be with her children all the time and is unable to work as a result.  

“They do get a [disability] grant, however it is not enough to maintain all of us. I also rely on my family but it is still not enough.”

Each of her children have various – and unique – needs. And each attends medical sessions separately. Madumise must travel with both children every time either one needs a medical check up. Now the young mother is appealing for help. 

“I want to buy her artificial eyes because the ones she has are blind and they cost a lot at private hospitals. We don’t have them at public facilities. The artificial eyes that were recommended to me cost about R500,000,”  Madumise says.

She hopes the artificial eyes will help improve her daughters’ appearance. 

“I need donations to buy walking sticks, Braille [books],  and diapers for my son. As for their treatment I don’t pay anything because I use public hospitals. But I don’t see progress. That’s why I have decided to seek help from the public so that I can be able to seek help from private specialists.” 

Need for awareness and support 

Otsile Moagi, 49, of Thaba Nchu has four grown children who were all born blind. He tells Health-e that they also have microphthalmia.

 “All four children were born from different  mothers and I must say that at first I thought I was bewitched until I visited specialists,” Moagi says.

Local optometrist Mohau Ralekhetla says there needs to be more awareness about the condition. “Many people, especially parents, come to enquire about microphthalmia. Patients I have seen think they were bewitched or that the children fell at birth. But I always explain the causes,” he says. 

Meanwhile Ntswaki Molelle of  Winburg Autistic Parents Club, an organisation formed by parents with children with autism has advice for Madumise. “She should be an ambassador of hope for her kids, and form some type of club that will raise awareness of what children are experiencing.”

The Society for Blind Free State has urged Madumise to join it. Annamarie Devenier is an executive director at the non-profit. She says Madumise will learn a lot from their programmes. “There are support programmes which may help in the situations the kids and family are going through,” she says. -Health-e News

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