By Vicky Martin, adult OA/TOF.
I am happy to be able to make a donation of £71,000 to TOFS following the death of my mother June Martin, who died at the age of 94 last July, at home.
As an only child (and an adult OA/TOF), a lot of responsibility fell on my shoulders in her last years, which was not always easy because of her strongly independent nature! She could be a determined lady, strong-willed and often unpredictable with her opinions and decisions (depending on her mood at the time). Her carers often found her very challenging – as did I – and in the last weeks it seemed she just didn’t know how to give up, which was tough to witness.
Of course, this determination is what drove her success. My parents’ wealth was entirely self-generated. Dad’s father worked for the railways in Cornwall his entire life, ending up as station master at St Erth. His parents wanted him to remain and become a bank manager – not to go to Nottingham University! But it was there he met my mother, who already lived in Nottingham and was inspired to study pharmacy by the nice lady who would pop her head out of a hatchway at the hospital to say “Who’s next?” and then provide treatments for the childhood asthma which dominated mum’s childhood. Mum had a string of successful pharmacies and dad carved out a niche in research, which means some people still refer to him as the “father of British pharmacokinetics”.
Their first child, John, died at a month old, from pneumonia. He never left the convent-run unit in which he was born, and it has more recently been speculated that he may have had an undiagnosed TOF. My parents were unable to share their grief. Mum’s need to talk eventually threw her into voluntary work, first doing “meals on wheels” and later becoming involved in care of the elderly. In the following decades she co-founded Ascot District Day Centre, which (together with other charitable roles) led to her being awarded the MBE by the Queen in 2000.
When I was born, nearly three years after John, and immediately whisked off to Great Ormond Street, mum’s life was turned upside down. Back in 1966, OA/TOF surgery had only a 50:50 chance of survival. My father actually stated that he felt it was wrong to operate because, in his view, disadvantaged children had no place in society. I had the familiar run of chest infections, feeding difficulties and strictures, with repeat trips to Great Ormond Street, often being seen by James Dickson (who went on to Sheffield Children’s Hospital and is still a TOFS patron).
My solicitor (a wills and probate specialist) informed me that it is possible to change someone’s will after they have died, and that this could lead to money going to worthy causes and a reduction in inheritance tax. Anything given to charity is always free from inheritance tax, but if 10% of an estate goes to charity then the remainder is taxed at a reduced rate of 36% compared with the normal 40%. The process involved is to create a deed of variation, and this can be done up to two years after the death. Mum’s will had already granted around 3% of her estate to the Day Centre, so making up the extra 7% made sense … I felt good about the idea.
I had few difficulties choosing the charities, but it was somewhat harder deciding the amount to allocate to each!
Great Ormond Street will receive the largest donation, £250,000. Of which £100,000 is go to Play Services, £50,000 to Research (to help fund research in 2021/22, including the rare but sometimes serious effects of Covid on children), £25,000 to social care and £75,000 to General Funding (the ‘pot’ from which the hospital can draw down funding for areas of greatest need over the coming year). Had I not survived mum, all of my share would have gone there, and of course I owe my life to them.
I am convinced that the work of play specialists, and the availability of hospital accommodation for parents, helps to minimise traumatic effects for children in hospital, so these areas are a great match for me because childhood PTSD is a big interest of mine.
TOFS will receive £71,000. The group was not around when I was young, but I am sure mum would have benefitted from having someone to share with – and for sure she would have found it easier if there had been a source of information about the condition: of course in those days even the surgeons knew little about it.
Mum’s final months (and my experience of them) were made much easier thanks to my bringing in Thames Hospice’s community team; and Changing Faces is a fantastic charity, predominantly involved with facial disfigurement but also tackling any kind of medical difference (they have presented at previous TOFS conferences). These charities get £22,500 each.
Smaller donations go to CPRE (the Campaign for Protection of Rural England, £10,000), inspired by the troubles I had with a nearby developer at my previous home, and FOP Friends (£5,000), another childhood medical support group, which was nominated by a friend who ran a yard near mum’s home where I frequently took my horse while caring for mum, and without whose support things would have been very difficult indeed.
I hope mum would be happy that I have been able to make considerable donations to all these good causes, and I hope I will be able to continue supporting these charities in the years to come as a result of my inheritance.
For more information on how you can make a will and remember a charity, please visit: www.rememberacharity.org.uk