Lotus River couple appeals for help after daughter diagnosed with rare disease
Cape Town - A family from Lotus River is appealing for help after their little girl was diagnosed with a rare disease.
Eden Green, 2, was diagnosed with Gaucher Disease last week, which has left her parents heartbroken.
Eden’s father, Kurt Green, said her stomach had grown abnormally, and that had prompted them to go to hospital.
“We started seeing how other 2-year-olds are compared with Eden, and we saw something was wrong. We then went to the Red Cross War Memorial Children’s Hospital in July, and they did a number of tests on her,” said Green.
Blood samples were taken and sent to the US and Libya, where it was confirmed Eden had Gaucher Disease.
“We found out there is no cure for it; you can only treat it. As a parent that’s hard because, can our child live a normal, healthy life?” said Green.
Gaucher disease is a genetic disorder where fat-laden Gaucher cells build up in areas like the spleen, liver and bone marrow, causing organ inflammation and dysfunction.
The cost of the treatment for Eden has left Green and his wife, Nicole, at their wit’s end.
According to Dr Marc Hendricks, a paediatric oncologist at the Red Cross War Memorial Children’s Hospital, Eden will require enzyme replacement therapy.
“In order to grow and develop normally she should receive 1.8 vials at her current weight every two weeks, at a cost of R69 259 per month. Her requirements will increase as she grows, and with that the cost of the therapy,” said Hendricks.
The family has started a fund-raising drive to raise funds for Eden’s treatment. A fund-raising page was started by Jessica Davids, Eden’s relative, and to date she has raised R36 966.63.
Davids said: “Eden’s parents have been doing all that they can to come up with the funds, but it is not close to what they need in order to pay for the treatment.
“If they are able to come up with the money, little Eden would be able to get the treatment she needs in order to survive.”
Nadia Charles, a teacher at Sunnyside Primary School and co-director of the NPO Collaboration for Good, is helping the family raise funds for Eden.
“The manner in which the community has reached out since the start of advertising and posting on Facebook – the response has been overwhelming and heart-warming.
“You can imagine the task ahead for the family in terms of raising funds,” she said.
Anyone willing to assist can contact Charles at 072 274 4763.