This is my big brother Lee (middle) aged just 41. Not many people will know this, as Lee is usually very private, however since 2003 Lee has suffered with IIH (idiopathic intercranial hypertension) and IN (idiopathic neuromygalcropathy) which essentially meant he lost all use of his right side including his neck, shoulder, arm, hand, and a large part of use of his left leg. IIH is fluid on the brain, on lees most recent spinal lumbar puncture his fluid registered at 42, whilst the usual person would be at 15-20. This meant that his brain was pretty much being crushed by the fluid, which in turn caused the IN, severe right ear damage and deafness, jaw damage, eye problems as the eye was being pushed out and bulged. After 15 years of constant hospital appointments at the UCLH, and undergoing hundreds of very obtrusive tests, pet scans, CT scans, MRI’s and tilt table testing, this has left Lee with severe vertigo, meaning that he cannot go above or below ground floor level. This is extremely difficult when attending hospital appointments etc. Throughout all this my mother and myself have helped fund Lee financially, through private Physio therapy at £90 per hour weekly, alongside private white light therapy, ENDR and CBT. A few years ago Lee managed to start attending the gym to build back muscle in his right side, but it didn’t help as much as hoped. Lee now has constant vertigo, deafness, sight problems, disorientation 24/7, alongside severe dehydration due to his EDS TYPE 3, IIH and various other diagnoses. In March 2004 my father (diagnosed paranoid schizophrenic) committed suicide, by jumping off of the Brent Cross flyover. He landed on his head, broke literally every bone in his body, had severe damage to his entire body, and after an extremely long 7 1/2 months (of which I was pregnant throughout) he horrifically died in Sept 2004. These events caused my mother, lee and myself to be diagnosed with complex PTSD. Whilst my mother and I can get by daily, Lee was extremely affected by this & due to the severe complexity of his illnesses his life is affected 24/7 by either PTSD or physical disability. We have all dealt with this as part of life, and up until September last year we were going ok. However in September 2017 Lee developed a lump in the left side of his neck. After attending doctors appointments for weeks and being told it’s a swollen gland and given antibiotics and nose sprays, lee was finally given an appointment with an ENT specialist. In December 2017 he referred Lee for various scans and biopsies and confirmed in January this year that Lee had throat cancer. This totally knocked us off our feet to say the least! In March 2018 Lee had 6 hours of surgery to remove 34 lymph node glands and a large part of diseased neck tissues and nerve. This left Lee with not only a right side that he couldn’t use, but also then his left side locked in position due to nerve damage, as well as a 12 inch scar from his ear down his neck and right round to the front. Due to lees severe vertigo the specialist arranged for Lee to have surgery at the private New Victoria hospital, as St George’s and Kingston hospitals would mean Lee would need to go upstairs to another level, which he cannot do. Radiotherapy was offered to Lee but as his specialist said ‘to not have it would be risky, but not reckless’. Lee therefore declined the radiotherapy, as the process of it would mean he would have to wear a complete custom built face mask for the radiotherapy and be put into a radiotherapy machine every day for 6 weeks, all of which with his complex PTSD, alongside pain from his right side, and now pain from his left side, with the vertigo and disorientation he would not mentally be able to cope. The specialist agreed that knowing lees other diagnosed illnesses this was not a bad decision, but that he would have check ups every 3 months to scan his neck and throat. In June Lee went for more scans, and was advised he needed another CT scan. Due to all of lees anxieties this took me over 3 hours from the moment we got to the hospital to actually get him into the scanner, for what was less just over 3 minutes for the scan to be performed. Every time this leaves Lee in an emotional and mental breakdown state. We returned on August 16th last week to lees specialist to be told that the cancer is now at the back of lees tounge and spread within his throat. He urged that Lees life ‘is in serious danger’ repeatedly and that he must have a further biopsy (operation), a pet scan, and then his case will be put before the NHS board suggesting 6 week intense radiotherapy as his last and only hope. If this cannot be performed Lee will have possibly 6 months of palliative chemotherapy to prolong his life for possibly a 12 month limit after the diagnosis last week. Effectively if Lee does not have the biopsy and radiotherapy he will die painfully very soon. Obviously the radiotherapy comes with its own obstacles, lee will need 10 teeth removed prior to the radiotherapy, and due to PTSD Lee cannot drive or be driven over any flyovers or even a dual carriageway, and certainly not a motorway. This impinges his life enough already, daily it is bad enough but he missed my aunts funeral in March in Kent and my graduation in July because he physically and mentally could not get there. Lees private ENDR therapist James Golding has been a great input in calming Lee throughout the recent procedures, however his fees are £70 per hour of at least 1 if not two appointments a week. Alongside this Lee sees a specialist in homeopathy to assist with his vertigo and debilitating body at £65 per session of 1-2 a week, as well still seeing his private physiotherapist weekly at £90 per hour. These costs alone, alongside lees gluten and dairy free diet, travel costs to and from hospital appointments, plus extra supplements and vitamins, ( plus the purchase of an electric armchair and adjustatic bed in March) have left of us totally depleted financially. My mother has severe scoliosis, EDS Type 3, Raynaud disease, COPD and survives on disability benefits. I too have EDS Type 3, asthma, PTSD, autism & ADHD, as a single mother to two young daughters (both also disabled) and have a very limited low income. We have struggled and juggled financially for years to be able to help Lee, but this recent diagnosis is a step too far for us even to reach to save my brothers life. The biopsy alone is £2,500 and is needed within the next week, and the extra costs as explained will be ongoing for some time after. Please help in any way that you can to save my brothers life. This isn’t a maybe, it’s life or imminent death. He has been through enough already, and just wants to live. He is only 41 and has already had to deal with never having a ‘normal’ life of marriage and children, please just help him to survive.

Thank you all so much for reading this, I know it’s not an easy read, and it’s even harder to cope and deal with every moment of every day. Xx