CHARD NEWS: Saffie gets the support of Freemasons for rare condition research
AN AMAZING young girl who has been diagnosed with an auto-immune lifelong illness was on hand to receive £500 towards the charity which supports those living with the condition.
Ten-year-old Saffron Eggle, who attends Tatworth Primary School near Chard, was presented with £250 from the Chard-based Lodge of Prudence and Industry Freemasons and a matching £250 from the Somerset Province of Freemasons.
Saffron’s mum, Claire, is an apprentice at the Floweringi flower shop in Boden Street, Chard, which has also been raising the awareness of Neuro-Myelitis Optica and much-needed research funds for the NMO UK charity.
Claire and husband Gareth joined Saffron, who is better known as Saffie, for the presentation at the Chard Freemasons along with Ingrid Edginton, of Floweringi, and other friends and supporters.
“We’d like to thank the Freemasons for their wonderful support – it really is very much appreciated,” said Claire. “It is so important to try and raise awareness about NMO because not many people have heard of it.”
Martyn Millward, the Worshipful Master of the Lodge of Prudence and Industry, said: “We have been delighted to support Saffie and the NMO UK charity.”
NMO symptoms can include anything effecting the spinal cord such as paralysis or the optic nerve such as blindness during an attack – temporarily or permanently.
Saffie was the first child in the South West to be diagnosed with NMO and joins less than a handful of UK children to have the condition.
Some older people are misdiagnosed with Multiple Sclerosis and although it can present in a similar manner, treatment is very different.
Saffie was aged eight when she was first diagnosed with NMO, but only after a succession of medical appointments, examinations and head-scratching from doctors.
Her parents first noticed something not entirely right with their daughter a couple of years earlier when she suffered with pins and needles in her hands and feet, while she would also take a long time to eat meals and struggle to walk distances and problems with social interaction.
PHOTO – TOP: Ten-year-old Saffie Eggle (front centre) receives the donation from Martyn Millward, Worshipful Master of the Lodge of Prudence and Industry in Chard, and other Freemasons along with her parents Claire and Gareth and other supporters including Ingrid Edginton of Floweringi.
PHOTO – RIGHT: Thumbs up from Saffie Eggle as she lives with NMO.
In October 2015 Saffie complained of backache and road bumps would cause her to cry out in pain and her walking was not right in the mornings.
Her doctor noticed a curvature of the spine and referred her onto the orthopaedic team where an x-ray suggested that the back pain may have been due to short hamstrings.
A review with a physiotherapist showed no areas of concern and Saffie was sent home with a set of exercises to extend her hamstrings.
Saffie struggled to do the exercises and her left leg was lagging behind and the problems persisted for six weeks before, literally overnight, she was back to walking normally again – much to the amazement of her parents.
But in March 2016 her parents were caught wholly unprepared as Saffie woke up one morning unable to walk and with a significant loss of sensation all over her body.
Neurological tests, medical history looked into and many conversations finally led to Saffie having her first MRI and first set of blood tests.
Something on Saffie’s MRI concerned doctors and she was transferred to Bristol Children’s Hospital and a biopsy was carried out amid fears that she had an inoperable spinal tumour.
Thankfully the biopsy came back negative, but although that brought huge relief – the question marks about what was causing Saffie’s illness continued.
The tough little girl underwent more MRI scans and blood tests, other investigations and was poked and prodded incessantly – but still nothing.
But then, finally, they were able to identify a rare condition known as Neuromyelitis Optica Spectrum Disorder (NMO).
Saffie stayed at Bristol Children’s Hospital for two months before being allowed home for good where she and the family have received great support.
The youngster will live with NMO but now that her family know what symptoms to look for – action can be taken quicker.
Claire said: “We really need to try and spread and share the information about NMO. The next new person who has NMO might just get diagnosed a bit quicker and have fewer short or long term issues as result.”
For more information about NMO or to read Saffron's story - please visit www.nmouk.org .