We love dearly our daughter Abi, now 13 years of age, a young English girl who has unnecessarily been supported on dialysis for over 3 years. Initially told there was no clinical evidence to access vital medicine to support a kidney transplant, for 15 long months we have campaigned relentlessly and finally proved to NHS England that evidence DID exist. But right now, Abi is STILL waiting for her life saving medicine, Eculizumab. That’s 3 years that Abi has been supported on dialysis, a total of 1,095 dialysis sessions, 13,140 hours of childhood and 780 days of education lost. Right now we still wait, yet: - NHS England now admits there IS sufficient proof that Eculizumab is effective - NHS England now AGREES that Eculizumab will keep Abi’s transplanted kidney working - NHS England have now written a policy stating they WILL commission the medicine - NHS England have committed that they will review the expansion of this policy to consider pre dialysis and pre-transplant patients What are we waiting for? Well, NHS England STILL has to agree to fund this life saving medicine even though right now, this drug sits on the shelf of not only Abi’s hospital but in all Trusts throughout England!! Yesterday, today and tomorrow NHS England provide Eculizumab to children and adults for exactly the same purpose that Abi, and other patients like her, need this treatment. By boldly stepping into the public arena, Abi has provided to the world a window into her life, living with kidney failure. Abi has illustrated clearly and simply just how impossible it is for English patients of rare diseases to apply for life saving treatment whilst it continues to demand for evidence of clinical effectiveness, evidence which cannot be easily gathered by clinicians due the rarity of case studies. But changes are happening. Labelled the ‘Poster Girl of Rare Disease’ by Phillip Schofield, despite her young age Abi is making a difference. In a conference in Uppsala in Sweden Abi’s picture was displayed alongside David Cameron by an English professor to demonstrate the plight of patients with rare kidney disease and the battle they face in accessing treatment. 82 scientists from across the world were so moved that day they pledged to centralise intelligence regarding research, trials, treatment and cures to support clinicians in their applications for treatment for patients with Dense Deposit Disease. This work is now well underway and patients across the world continue to contact Abi offering their help, and others seeking support who have until now, struggled in silence. It’s really is quite phenomenal! …..BUT Whilst Abi strives to help others, right now Abi needs your help. Abi needs a transplant now. Having the most aggressive type of Dense Deposit Disease, Abi needs Eculizumab ready for when this disease again begins to attack her new transplanted kidney. PLEASE sign Abi’s petition to call upon David Cameron and the government to support the funding of this life saving medicine when NHS England meet on 27/6 at their annualised prioritisation meeting. PLEASE sign this petition to challenge the logic that a treatment prescribed today for one patient should be prescribed for another. PLEASE sign this petition to give English patients this vital medicine just like patients in Scotland, America and Europe. PLEASE sign to protest that the original case evidence used in Abi’s first application for Eculizumab to NHS England is being used successfully by Scottish patients today! PLEASE sign today to ensure that organ donation; such a precious ‘gift of life’ is given a chance to ‘give life’ for as long as is possible with a treatment which NHS England accepts will work. PLEASE share our petition with anyone or any organisation you are connected with, asking them to sign, support and share again. And lastly to each of you who have signed, commented, contacted us with support and so very kindly raised funds for Abi’s cause, a heartfelt THANK YOU to each of you from all of us. Abi, Jess, Jo and Andy Longfellow