Rare diseases haunt their sufferers

A Gauteng family is fighting an uphill battle to give their two-year-old daughter who suffers from a rare disease the gift of walking.

Little Phenyo Moropa of Midrand was diagnosed with tibial hemimelia, a rare congenital limb deficiency which affects one out of a million babies in the world.

Sowetan spoke to Phenyo’s father Tshepo Moropa yesterday ahead of today’s Rare Disease Day campaign meant to bring awareness to the plight of people such as Phenyo who suffer from unusual diseases.

According to Rare Diseases South Africa, one in every seven people in the country are affected by a rare disease. However, 95% of these diseases do not have approved drugs.

After numerous failed attempts to get their child treatment in South Africa, Tshepo and his wife Moipone started a campaign to raise over R2-million for Phenyo to get surgery.

Moropa said the past two years had been challenging, with experts in the country telling them to have the little girl’s leg amputated.

Moropa said they discovered an expert doctor in Florida, US, who treats the disease.

“We are not going to give up because this can be rectified. There are days when we feel like throwing in the towel, but when you look at her it makes you want to keep pushing.”

Part of Phenyo’s tibia bone is missing which causes her right