Fundraiser launched for pioneering treatment for 12-year-old Doncaster girl blinded by rare and deadly bug
Just a few years ago, 12-year-old River Brakkan was just a bubbly Doncaster girl with a talent for baking.
She never missed lessons through illness, and loved making cakes in her spare time.
And she was good at it. In May 2018, she was named the runner-up in the Great Doncaster Bake Off 2018 for her chocolate brownie cake, as part of the Delicious Doncaster food festival, leaving adult bakers in her wake.
She used to bake for charity, including fundraisers for the Great Ormand Street Hospital in London.
But out of the blue, River was taken ill.
Mum Luna Brakkan, a former Donaster Free Press employee, from Hyde Park, said her daughter was just not herself and she took her to the doctor. And in January 2019, she was diagnosed with acute myeloid leukaemia.
River was treated at Sheffield Children’s Hospital and responded well – she was in remission in just weeks.
She was supposed to have four rounds of chemotherapy, and was responding well, but after her third round, her immune system was not working well.
On June 30 last year, she developed a temperature and was taken back to hospital. But she did not respond to the usual antibiotics and became seriously ill.
Two weeks later she was diagnosed with fusarium dimerum – a rare and potentially deadly fungal infection.
The infection got into her spinal fluid and caused meningitis-type symptoms. It also caused a fluid build-up on her brain, hydrocephalus, which was so extreme it cost River her sight in both eyes.
Then in October a shadow appeared on her MRI scan that her doctors have not been able to identify. It is thought to be a pocket of cells and fluid around her brain stem.
It is growing but doctors cannot get to it to carry out tests because it would be too dangerous, as it is close to areas responsible for vital functions.
Now the family is trying to turn to pioneering new methods to find out what the scans are showing.
Mum Luna said: “Over the last two months it has begun to change and it has grown. We are told that this area is in a place that cannot be reached as it's in a dangerous place.
“A biopsy would be the only way to find out but the possibility of going in to do one could be catastrophic for River.
“River is still fighting. We have discovered that there are possibilities, that other hospitals have facilities that our hospital does not, the most integral being at Harley Street where they have a neuro robot that can make once inoperable procedures possible.
“They could get to the area. The barrier is that it is expensive. The treatment cost is, ridiculously, £35,000. There has to be a way. We have to try.
“We have lived at Sheffield Children’s Hospital for seven months now.
“We feel there is nowhere to turn but we cannot fail our little girl who is depending on us. She has recently said she would like to go to school and still has dreams of opening her bakery, a dream she has had since she was five years old.”
River is not letting her illness beat her, and even though she has lost her eyesight, she still does baking at her bedside, putting together the ingredients to make shortbread. She can still identify the ingredients by touch.
Now her family have started an appeal to raise the £35,000 they believe will be needed to the operation. They hope a specialist may be able to use 3D images and MRI scans to access the site, and are talking to neuroscientists who specialise in children’s medicine.
Luna added: “She has, and is continuing, to fight and we need to do everything we can to help her get well and realise her dreams. Over this last year we have also had a new baby boy. He needs his big sister and our other daughter, Willow, needs River too.”
Log onto https://www.gofundme.com/f/rescue-river to donate.