In 2022, Patricia Weltin from the charity, Beyond the Diagnosis, reached out to us to find a child born with Congenital Diaphragmatic Hernia. Having met Patricia many times in the Rare Disease conference circuit, we knew well her amazing traveling art exhibit that raises awareness of all Rare Diseases.
Of course we agreed to participate and raise awareness of both Rare Diseases and Congenital Diaphragmatic Hernia!
As Beyond the Diagnosis was expanding outside the United States and knew that CDH International was active in Africa, Patricia asked for a patient born in Africa. We said yes, but with a stipulation; that our African baby represent the 99% of children born with CDH in Africa and be a non-survivor. Beyond the Diagnosis agreed to add their first angel to the exhibit.
We then reached out to our South Africa Representative, Amanda Dean, who found the perfect little angel for the exhibit; Amohelang. Her mother, Nomthandazo “Maureen” Bhekiswayo, said yes!
“My baby’s name is Amohelang a Sotho name which means Accept. Born 17 January 2018. She was diagnosed in 20weeks with a LCDH. At 37 weeks they operated me and rushed her to the NICU after 2 days they did an operation to fix the hernia. Everything seemed to be well but after few days something like milk came out of her wound. That is when she started deteriorating. She only spent 45 days in the NICU before she passed.”
The artist was chosen. Jota Leal agreed to take on the projects. Jota has done many beautiful portraits for Beyond the Diagnosis and this was his first angel as well.
The photos he was given:
The masterpiece he created:
So many, many tears of joy and awe were shed when we saw this painting! Jota caught her so very well. It is just perfect.
We are so beyond thrilled with this painting and so grateful to Jota, Beyond the Diagnosis, and Amohelang’s family
Learn more about Beyond the Diagnosis at https://www.beyondthediagnosis.org/.
