Hope for Pretoria six-year-old after months in hospital
Jade Ward, from Elarduspark in the east of Pretoria, was diagnosed with Fanconi anaemia, a rare inherited disease that affects the bone marrow and the production of blood cells.
A six-year-old Pretoria east girl, who has spent two months in hospital for a life-saving bone marrow transplant, has survived the surgery and is slowly recovering.
Jade Ward, from Elarduspark in the east of Pretoria, was diagnosed with Fanconi anaemia, a rare inherited disease that affects the bone marrow and the production of blood cells.
The lack of production of blood cells weakened her body and made her vulnerable to things such as heart failure and brain damage due to not getting enough oxygen in her body. She was diagnosed more than a year ago and the doctors told her parents, Chrystal and Jason, that their daughter needed a stem cell transplant to save her life.
Jade’s father, Jason told Rekord that after a year without a stem cell donor, they received the good news of one found in Sweden through the DKMS (previously known as the Sunflower foundation).
“Jade had to go through chemotherapy to kill her faulty bone marrow and make way for the new one.
“A few days into that process, the doctors called us and told us the donor might have contracted Covid-19 and we had to stop everything for two weeks,” Jason said.
After that hurdle, Jade was back at the hospital on June 9 to continue chemotherapy in preparation for the surgery.
“During the chemo, Jade did not have severe side effects but her hair started falling out.
“Jade received a blood transfusion at that time because her bone marrow was not producing any blood cells,” he said.
Jade went through stem cell transplant surgery on June 15.
“She was placed at an isolated intensive care unit for the doctors to monitor how her body reacts to the new stem cell.”
Six weeks after the surgery, Jade was ill.
“Her tummy started bleeding. Its lining was thin and it could not bear the fight between her immunity and stem cells, the intense medication and the effects of the chemo,” said Chrystal, Jade’s mother.
Chrystal has been in isolation with Jade at the hospital. Other than the bleeding tummy from time to time, Jade also suffered some sores in her mouth and was weak.
“She lost a lot of weight because she has spent two months without real food. She was weak from all the medication, but she is now recovering. Last week Monday, she took her first steps out of the bed and we had a little walk.”
Chrystal said her hardest moment in hospital with Jade was when she had a seizure on July 30.
“I’ve never seen a child having a seizure. That was my lowest moment, but the stress never stopped since she was born because we did not know what was wrong with her.
“When you drop her off at school you are not sure whether your child will still be alive at the end of the day because the doctors for five years did not know what was wrong with her.”
Chrystal said Jade was, however, getting stronger by the day as of last week.
“The transplant was a success. The doctors told us that her stem cells have grown to a point that they are almost a 100% in graft, which means her body and the donor’s stem cell have accepted each other,” she said.
Chrystal described the transplant as a “miracle” because not many children get donors.
“We also lost our firstborn child when he was just two months old. He was never diagnosed, but we believe that he might have also had the same disease.”
Chrystal said she plans to raise awareness about Fanconi anaemia for other parents whose children might have the rare disease to get help.
“I will visit the hospital regularly to give hope to sickly children with cancer or any severe sickness,” Chrystal said.
Jade, who turned six on Monday, spent her birthday in an isolated ward at the Unitas hospital in Centurion with her mother and doctors and nurses but she could not have any cake.
Her parents said the transplant was expensive costing over R2-million but the support of community members, health insurance and their workplaces meant that they were surviving financially.
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