Updated: Sep 22, 2022
After multiple doctors’ visits, an ultrasound finally confirmed what we already knew- something was wrong with our baby girl. Then came the endless tests seeking diagnosis. This is our story of Eden.
Eden was born on the 10th of May 2018 weighing 3.4kg. The first year of Eden’s life was relatively normal until she started walking around by herself, then we noticed she bruised easily, and the bruise would take longer and longer to heal, she has a cousin born two weeks after her, so we always compared her growth with her cousin, and she seemed to heal easier than Eden as they both learned to walk by themselves.
As she got older, we noticed her belly was much too big for her small frame and consulted our GP for examination and he declared as long as she’s eating and pooping normally there’s nothing to worry about.
We left it to his professional opinion until Eden’s belly wouldn’t change shape or size, so we changed doctors. However, the second opinion was the same and, eventually after numerous doctors’ visits the last doctor referred us for X-rays and an ultrasound as he felt something on Eden’s tummy that was abnormal.
The X-rays and ultrasound showed the extension of the spleen and liver beyond what’s normal for a 2-year-old. We were referred to Red Cross children’s hospital where more tests would be done to determine the cause of the extended spleen and liver.
Once we arrived at Red Cross hospital, they made it clear we were not leaving until we knew what the cause was and just how serious it was. Eden was tested for TB, malaria, covid, meningitis, and even leukaemia and she tested negative for it all.
The doctor advised that they had an idea of what it could be but of course needed to test for it to confirm. We then started the task of sending blood samples to Israel and America, but what should be a 2-week process ended up taking months due to the worldwide shutdown over the Covid-19 pandemic.
When we finally received the results from the doctor and confirmation that Eden had Gaucher, we were both relived that at least we have a diagnosis to work with but also mortified over the cost of the treatment.
How does one put a price tag on a life?
It took us two days to let it sink in and then we mustered up all the motivation needed and started fundraising, within two weeks we had enough money to get started on our treatment journey.
Every second Tuesday starts the same for us, Mom gets ready for work and she’s off, I let Eden sleep in while I start with some work before we leave for hospital. Once I’m done and Eden wakes up, our hospital day starts with excitement of not going to day care but also anxiety for the unknown and unexpected that is the G1 Oncology Ward at Red Cross Children’s War Memorial Hospital.
Our first stop is the local Spar for some treats to smooth over the day for little Eden as she has the biggest appetite for all treats, sweet and savoury. According to Eden she can eat chips all day, every day, forever!
We cannot predict if we’re going to have a short or long day at hospital as the staff simply help and assist all patients of the oncology ward, by appointment or walk-ins, so we have come to practice patience and the understanding of the mental-emotional task the staff endure with smiles all day long.
Eden has the personality that’s both shy and outspoken, she takes time to warm up to the other kids but breaks the ice with sharing her chips and anything else packed in her lunch bag.
It’s such a joy for me to sit and watch Eden interact with nurses and doctors whether it is for check-ups or for blood tests, she doesn’t speak much, but she goes along with what’s needed to be done.
Some Tuesdays as we wait to see the doctor in the reception area, chemotherapy patients ring the chemo bell signifying the end of their treatment and we join in by clapping along, everyone’s face lights up for the little kid who fought and won the battle, I sit back and think our little Eden won’t ring that bell as there’s no cure for Gaucher disease…yet.
It saddens my heart for my little princess who’s so full of love, joy, always playful, not knowing the battle ahead of her and not knowing how long she’s going to be in treatment for.
Once we into the day ward we are shown how lucky we are amongst all the suffering kids with different types of cancer or diseases and receiving their treatment for up to 8 hours on a drip.
It’s as if Eden is gaining more years of life as she receives her infusions. When we walk out after treatment, she’s all smiles and greets all the doctors and nurses as though she’s brand new to the world. I feel an immediate sense of joy and hope that everything in her little world is perfect.
What makes me happiest as the dad of Eden, my rare warrior is when she is able to live her days like any other normal child. Seeing Eden enjoy playtime with her siblings, cousins, and many friends from creche is like a dream for us. When her body allows her to do typical 4-year-old things like jumping, running, and playing and going about her day with no limitations is what keeps us going.
I’ve learnt to be more understanding and adaptable in our changing situation. Patience and gentleness go a long way and is often helpful in calming the situation down.
I am forever grateful to the help and assistance from Rare Diseases South Africa and Red Cross Children’s Hospital as we were totally lost without direction or instructions on how to be parents to a child with a rare disease.