In January 2022 after celebrating Christmas and the New Year with his family and friends, our dad, Leon Whitfield went on a long awaited holiday with his partner Chrissie. A few days into their holiday Leon's sight started to blur. Leon saw a Doctor as soon as he returned to the UK and was assured there was nothing wrong with his vision and that this was probably caused by stress and that it would ‘sort its self out’.

Throughout January, Leon's vision continued to decline Leon and us, his family became more concerned, convinced there was something more going on which required further investigation. Dad had to wait for an MRI scan and each day that passed, he saw less and less; the initial MRI scan however did not show any obvious signs of damage to dads brain.

Dad started to hallucinate and in February his balance became unsteady, but in his true determined style, he continued to see family and friends to try and keep a level of normality and take his mind off of his deep rooted concerns. Dad had a series of private appointments with Ophthalmologists ENT specialists,who were at a loss to provide a formal diagnosis.

In March 2022 dad was seen by the Neurologist at Southampton General Hospital he had first seen in February. The Neurologist saw a significant deterioration in Leon's condition and following a series of cognitive tests and the results from a further MRI, dad was diagnosed with Sporadic CJD on the 3rd March 2022.

This is an exceptionally rare condition affecting one in a million people in the UK every year, making it extremely difficult to diagnose. There is no treatment to stop or slow its progression, the proteins in dads brain were rapidly deforming and dad was given a prognosis of 1 – 3 months.

Leon was referred to the CJD specialists in Edinburgh as the neurologists in Southampton had limited knowledge of this disease. A doctor from Edinburgh evaluated Leon's second MRI scan and flew to Southampton to confirm the diagnosis of Heidenhain Sporadic CJD. His knowledge and expertise provided us with a more accurate prognosis of 1 – 2 weeks before the disease was likely to take him from us.

This news completely shocked our entire family and we stopped working to spend our last weeks of our precious time to care for dad, honouring his wishes to die in his own home. His beautiful partner Chrissie wanted to continue sleeping in the same bed as they rarely spent a night apart. The hospital bed we required was difficult to source and took many phone calls and emails before a bed was provided to meet his needs and allow us, his children to care for him safely around the clock.

District nurses and our local hospice Oakhaven supported us with dads medication, training me to give injections to administer his drugs safely whilst meeting his needs. We were able to fulfil dads wish to stay at home because of the area we live in the New Forest where we have a local hospice who supported families to care for loved ones at home, this isn't the case everywhere in the country and some patients end up being admitted into hospital.

A week before dad died he asked me to set up a charity in honor of him, to support individuals and families suffering with CJD. The charity I will create will help families fulfil the last wishes of their loved ones. It will make sure their last week’s aren’t spent fighting for a hospital bed to keep their loved one at home, or worrying about the practicalities of day to day care and all that entails.

With the support of the Charity, we will try to create lasting happy memories that families can hold onto forever, weddings, christenings moved forward to make sure the loved family member was present; local accommodation for families that live far away so they can support each other - the potential is great and one we are determined to achieve.

Leon Whitfield was a brave, remarkable man, still thinking about others even in his last weeks. He passed peacefully surrounded by his family.

CJD Family Support will be his lasting legacy. This Go Fund Me is a interim measure for friends and family who wish to donate whilst the formal charity is being set up.

Leon Michael Whitfield

6th April 1960 - 19th March 2022