The tale of a distraught mother
MIDRAND – They were told of miracle priests but the bank balance did not improve.
When she found out there was something abnormal about her baby, Moipone Moropa blamed herself and felt like a failure.
This is a story of a young mother battling to raise funds for her two-year-old daughter who was diagnosed with a rare disease at birth that affects one in a million babies in the world. Her daughter, Phenyo, has the extremely rare congenital limb deficiency known as tibial hemimelia which is a spectrum of deformity characterised by a shortened or absent tibia. In Phenyo’s case, the tibia in her right leg is missing.
Moipone said she felt horrible as a mother and questioned what she did wrong while she was pregnant. If this wasn’t enough, she was told that treatment for the condition was not available in South Africa but could be done in the USA. Phenyo needs three surgeries and rehabilitation at a cost of $146 000 (about R2 million) including travel expenses and accommodation for nine weeks.
The Midrand Reporter first published an article in December 2016 in which the family were requesting donations for this treatment. “This has been the most difficult and stressful thing my family and I have ever had to go through,” said Moropa. “We punished ourselves and didn’t go out at all. We only went to work. We felt so guilty when money had to be spent. Even grocery shopping felt like a luxury, but all that did was put us in an even darker hole.”
Moropa added that she thought people would see baby Phenyo, feel sorry for her and dig in their pockets to contribute. However, that was not the case. “Boy was I wrong. All we got was people saying shame and moving on and some people saying ‘ag, it’s just a leg’. Others were even telling us about miracle working priests but the bank balance was not moving. I started losing hope. It was starting to look like a far-fetched dream.”
Fundraising also meant Moropa had to leave work early on occasions to go to meetings, and do research and make phone calls during work hours. As a result, Moipone left her job in July last year to focus on taking care of her daughter and to raise funds.
“The stress of everything got to me and I had to make the decision of staying home full time. This meant me losing my independence and putting my career on hold. This broke my heart, I felt lost and I still do.”
After 10 months of leaving her job, Moropa said her family finally got the breakthrough they were praying for. The Florida- based hospital in the USA gave them a partial pro-bono, decreasing the required amount from R2 million to R880 000.
“What is even better is that it means we only have just under R500 000 to raise. We are so happy and we finally see the light at the end of this tunnel.”
To contribute visit www.getpwalking.org.za or contact the Moropa’s on 083 642 4156/083 2661 431.
Filler: How can the family raise funds? Tweet us @MidrandReporte
