Sharing the HoPE in Holoprosencephaly – Mwiza’s Story
After Florisa DeLeo graduated high school in Italy, she flew the nest and headed for the United Kingdom at age 19, taking up tourism work first and finally landing a job in the London corporate headquarters of VISA. Life was good.
However, the somewhat sterile corporate world became less appealing to her, and the volunteer work she’d begun doing for both her church and some local charities gave her a greater sense of purpose. She took a sabbatical from the corporation, then worked part-time before ultimately leaving to concentrate fulltime on giving back to those less fortunate.
Florisa met the man who would become her husband, Innocent Magambi, when he was living in a refugee camp in Malawi. Inno was 27 years old the first time he ever experienced life outside a camp, when a church in Malawi’s capitol Lilongwe sponsored him to go to college. The two strangers, both living in a foreign land, fell in love. Two days after their first wedding anniversary, Florisa and Inno welcomed their daughter Mwiza into the world and the fairy dust that had sparkled so brightly on their union was soon to be brushed away.
“As soon as I finished giving birth and the nurses were washing the baby, silence fell in the room and I asked ‘what’s going on’,” Florisa said. Mwiza was born with a cleft lip. “She couldn’t suck. There’s no anesthetic for babies in hospitals in Malawi so surgery to repair the lip wouldn’t be possible until age 2. We had a lot to come to terms with and rapidly had to make plans.”
Florisa and Inno learned Mwiza had HPE, when Florisa sent photos of the infant from their home in Lilongwe to London’s Great Ormond Street Hospital to consult physicians about surgery to repair the cleft lip. “They said have her checked for diabetes insipidus and her brain scanned for holoprosencephaly,” Florisa said. “It was baptism by fire. I was faced with a lot of medical jargon I didn’t understand. You Google HPE and your heart sinks.”
Crowdfunding from the couple’s friends and donations from the couple’s church in London and Lilongwe made travel back to the UK possible. Surgery at Great Ormond Street repaired Mwiza’s cleft lip and palate but, what was expected to be a 2-day hospital stay turned into two weeks. Mwiza suffered seizures. Following the surgery, she was still unable to take in enough nourishment by mouth and a year later, in Italy, a gastric tube was subsequently inserted for feeding.
“The hospital bill just grew and grew, and each time we asked about receiving the bill, we got no answer”, Florisa said. “Finally, three months after surgery, when we were back at the same hospital, we were told that there was a zero balance: an anonymous person had paid for it all.”
Life was challenging and difficult for the family during the time that followed, going back to Europe for months at a time. Florisa spent months filled with days on end in hospitals with Mwiza, traveling back to Italy where her parents lived. “I’m so thankful to Italy’s public health system,” said Florisa. “I would say it was fantastic, though others might not agree.” But Florisa lamented the fact that she couldn’t do he important work she’d come to Malawi to do, feeling discouraged and depressed. “As a believer [in Christ], I was confused.”
Florisa and Mwiza came back to Malawi, supported by Florisa’s father’s DHL shipments of food for the gastric tube feedings. Mwiza died of pneumonia in a hospital in Malawi. In the intense 20 months of her life, Florisa says that she and her daughter were very, very close. Florisa finds comfort in knowing everything that could be done for Mwiza was done. “I spent all of the time God gave me with her, hugging her all the time, kissing her all the time,” she said. “That I lived for her was a gift. It was worth it. I am so proud I could do it. Now I can see the value of everything.”
“Mwiza was an inspiration,” Florisa said. “When she was born, Lilongwe didn’t have sensory toys. I wanted to set up a nice, colorful environment for her at home for a child who can’t get out much.” Florisa couldn’t find such toys and resources in Malawi. Friends began to send her colorful fabrics, squeakers, and other items to use. After Mwiza’s passing, Florisa took the fabrics, crinkled paper and squeakers and made a soft baby book. Nine more books were made for friends and family.
This small endeavor was the inspiration for and sparked the creation of Kibebe International, a company now incorporated in the US offering a play mat and other handmade, sustainable, eco-friendly products made by and empowering refugees and Malawians, some of whom are disabled adults or parents of disabled children. “I can’t imagine how life would have turned out if Mwiza had lived a long life but, this is far beyond anything I could have imagined,” said Florisa “The generosity and support given me was extraordinary. These people who supported me when I needed it, who helped dig Mwiza’s grave and bury her now benefit from creating things that help other people too. And I am their peer. My experience with Mwiza was an equalizing experience. I am a peer, not a savior.”