Just4Children is supporting Tonia aged 22 from Eckington in Worcestershire who is raising funds for more urgent neurospinal surgery.
Tonia, now aged 22, started collapsing at age 14 and was diagnosed by experts with Ehlers-Danlos Syndrome with secondary disorders of Dysautonomia, Mast Cell Activation Disorder, gastrointestinal failure, bladder dysfunction as well as POTS which led to collapse. Tonia became bed-bound and spent three and half years of her adolescence in hospital. In 2015 viewers watched as the BBC DIY SOS team carried out a ‘big build’ on her home and finally gave her hope, enabling her to return home to Eckington.
Things took a turn for the worse when Tonia started suffering increased respiratory arrests and seizures. Her pain became unmanageable and in early 2018 she made a plea for anyone to help her.
Due to her symptoms it was suggested that she had an upright MRI Scan. The results were sent immediately to an expert neuro and spinal surgeon in Barcelona who found that she needed urgent surgery to save her life. Unfortunately, the treatment required was not available nor funded through the NHS, requiring the family to fundraise via ‘Just4Children’. In early June 2018, after an intense fundraising campaign Tonia and her mother, Victoria, travelled to Barcelona where they stabilized and prepared her for life-saving surgery. In a critical state her spinal fusion was brought forward and she had titanium rods and two of her ribs placed in her spine to stabilize her neck from CO to T2 on June 9th. The care, compassion and attention to Tonia’s condition that she received from the hospital in Teknon was outstanding and noteworthy, especially so since Tonia was one of the most complex cases the hospital has encountered. Every attempt has been made to keep costs down. However even pre-treatment assessment including scans and radiology costs more than £4,000.
Of course, there were other costs of surgery, medication, rehabilitation and Intensive Care hospital stay.
Tonia returned to the UK in mid July, a tortuous and calamitous journey, which saw her ambulance suffer a catastrophic failure and resulted in a rescue mission by Tonia’s supporters – with a replacement ambulance being sourced from the UK.
Tonia’s surgery and treatment in Spain had been an undeniable success and triumph – family and friends were in awe at the pictures of Tonia sitting and then standing after so many years of lying prone in a hospital bed. There is no doubt that the surgery saved her life. However, on return to the UK Tonia and Victoria returned to the news that the NHS would not support the care plan prepared by the team of experts in Barcelona. Tonia’s health went into decline as she was denied essential nutrition and medication to allow her to progress and heal effectively. Her family took her to a UK hospital when her lack of medications meant that she was having seizures, putting the stability of her fusions at risk. Whilst there, she got aspirated Pneumonia as well as Sepsis as a result of the plan from Teknon Hospital not being followed. She spent the better part of 3 months critically ill in hospital whilst she was obliged to adapt to the only care regime available by the NHS. It remains the case that many of the symptoms and conditions associated with Ehlers-Danlos Syndrome are not recognised, nor treated, by certain institutions and professionals within the NHS, despite guidelines being issued and the tireless efforts of EDS UK.
Tonia has worked really hard to rebuild her strength since surgery and has seen so many improvements enabling her to return to a sport that she is passionate about and in summer 2019 she was recognised as a National Champion in her Para Cheer stunt group. Her determination continued and she has been successful in securing a place on the Team England adaptive abilities Cheer leading team that will be competing at worlds in April.
In assessing the stability of her fusion and investigating causes of remaining symptoms and need for further treatment, neurosurgeons have discovered a further complication that needs addressing urgently in January. Tonia needs to have a mass removed which is compressing her jugular vein as it is hindering blood flow. The planned second-stage surgery that Tonia requires will take place in two stages and she will undergo further surgery on her spine in May to stabilise her and assess then for her ‘tethered cord’ lower back surgery all of which is also not funded on the NHS.
Again, Tonia’s family and friends, her fundraising helpers, known as #TeamTonia – are doing their utmost to keep costs down. At the same time the family are continually seeking appropriate specialists and healthcare professionals in the UK who will be willing to help her in her aftercare and those who will give her support for her EDS Dysautonomia and Mastcell Activation Disorder in the NHS.
Tonia is frustrated by her situation and deeply regrets that others are fundraising for her once again when she so keenly wishes to help others going through tough times. She is anxious to fundraise and pay back to society when she is in a position to do so. Tonia is humbled by everyone’s generosity and wishes to thank all for their incredible, selfless, contributions.
However, as mentioned, further assessment, surgery, treatment and rehabilitation lie ahead on Tonia’s Journey. The cost of this second-stage treatment, surgery, and now-known after-care takes us to our original planned total of £200,000.
As Tonia’s family, friends and supporters we also thank you most sincerely for supporting this most inspirational and courageous young woman. We regret having to ask you to fundraise again, but do so in the firm knowledge that Tonia’s life, and quality of life, is one worth fighting for.
Thank you so much for your support.