It breaks my heart to think of all the precious babies and their families who are struggling with their health. I feel this pain even more deeply now that I am a mum myself. It takes incredible strength and courage and these people need all the support they can get.
I have been contacted by a brave local mum, who is fundraising to help pay for life-saving treatment for her two year old niece, Josephine. She has asked if I will share Josephine's story and a link to her Go Fund Me page. Any contribution, however big or small, will help to make Josephine's future the brightest it can be. #TeamJosephine
Here is Josephine's story, written by her mother, Penny Watts.
'One day our beautiful, healthy 20 month old daughter Josephine was tearing around, the next she started vomiting. Quite random vomiting in the morning only. Diagnosed first as nothing; then a possible bladder infection; more vomiting more regularly meant we did a scope and gastritis was then indicated. Finally, after four weeks of vomiting, back and forth between doctors, in and out of hospital we did an MRI of her brain. There it was. In the doctor’s words " a large aggressive tumour" in her posterior fossa. She had developed hydrocephalus as a result and the tumour was pushing her brain stem triggering her vomiting.
We spent the following month in Red Cross Children's Hospital after a 7 hour surgery, where the highly skilled team of Doctors had removed a tumour the size of a small orange - this was roughly 85% of it. The remainder was left due to the risks involved in taking it out as the tumour had enveloped critical neuro-vascular structures.
Slowly our Josephine has started to recover. Her gross motor skills have been affected and she has a palsy on the right side of her face - the latter of which may or may not improve with time. But by the Grace of God you get through one day at a time, and that is how you start to live and regroup. Because once you start to learn more about cancer and brain tumours and her specific diagnosis (Anaplastic ependymoma) you realise you are only a fraction of the way through. That the hospitals and the removal of the tumour is just the beginning. But through it all you slowly begin to cling onto hope - that our Josephine will be one of the lucky ones. Because there are lucky ones - you have to have faith.
And there has been hope along the way: her most recent MRI revealed a stable residual with no new abnormalities and no spread to the spine. And so we begin our next step in our Journey: Radiation Therapy. The type of radiation that they offer here in South Africa (although highly advanced) still presents a risk of damage to surrounding healthy tissue which is exacerbated in such a young child's brain that is still growing. It has been possibly one of the most challenging parts of our journey so far: the fact that radiation will kill the remaining tumour and Josephine will be cured - but the doctors cannot say what the long term neurological fall out will be - 3 months; 3 years or possibly even as long as 13 years down the line. We needed another alternative. And so we began to look: Proton Therapy was a treatment that kept on appearing in our search.
Proton Therapy is a type of radiation with the main benefit being that it does not damage the healthy surrounding tissue but is able to target and kill the tumour cells. Unfortunately, this therapy is not available where we live, here in South Africa, but is increasingly being used as the treatment of choice in paediatrics overseas - especially brain tumours - due to its specific benefits.
After much research we have been accepted for Proton Therapy at WPE in Essen, Germany. The cost of the treatment alone is 84,000 Euros. We also have to factor in the accommodation; flights and living in Germany for 6-8 weeks during the treatment process, which would total up to just below 100 000 Euros.
Any parent, anywhere in the world, would want their child to have the treatment which would offer the best possible outcome for their future. If you are able to help in any way, please make a donation to support the cost of Josephine’s treatment. Your contribution will help make her future be the brightest it can. Thank you so much for reading and for your contribution. Please keep in touch with our journey.'
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Helen Wright, Founder of BirthWright, lives in Wapping, East London, with her partner and their two young children. In her life BC (Before Children), Helen was a primary school Assistant Headteacher, specialising in the Early Years. However, since becoming a mum, she is now a massive advocate for positive birth and is on a mission to help as many families as she can, to have the right births, indeed the best births, for them and their babies. Helen is an IPEN Certified Placenta Remedies Specialist, a Positive Birth Coach, KG Hypnobirthing Teacher, creative genius behind BirthWright Affirmation Cards and cohost of a monthly meet up and support group for parents in East London.
Head over to Facebook to join her group: The Pregnancy, Birth and Parenthood Village and follow her adventures over on Instagram.