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Hepburn Family raising awareness for MDS
Hepburn Family raising awareness for MDS
Updated on 06 October 2016
It is with deep sadness that we announce the passing of our friend and supporter Gavin Hepburn, who has died earlier this year.
Gavin's family has been terrific at rallying around to raise awareness of MDS generally - as well as raise funds in different ways.
Gavin's 10 year old daughter has been phenomenal - by talking about MDS at school assembly - and writing to the newspapers about her father's rare disease.
Below are the two articles published in the East Grinstead Online in 2015.
Details here - via the East Grinstead Online site:
http://bluebelldigital.co.uk/eastgrinsteadonline/please-help-daddy-says-olivia/
http://bluebelldigital.co.uk/eastgrinsteadonline/olivia-film-charity-videos/
Article 1
"We've had a very special letter this week from ten-year-old Olivia Hepburn (above left) telling us about her dad Gavin who is currently in hospital being treated for Myelodysplastic Syndrome (MSD), a rare blood disorder which stops the body producing the right amount and quality of blood cells.
People with MDS suffer from chronic tiredness and weakness due to the low levels of haemoglobin, which is debilitating and often requires regular blood transfusions which are time-consuming and restrictive.
Their platelet numbers, which prevent bleeding and bruising, can often be very low, and if they injure themselves, sustained blood loss may be excessive.
Gavin, who lives in Stephenson Drive, was diagnosed with MDS in 2012, and thanks to the Antony Nolan Trust received a bone marrow transplant at King’s College hospital in 2013.
He recovered very quickly, said Olivia’s mum Lisa, but after the family’s holiday this year was unwell again and it was discovered that the two per cent of his own bone marrow that he still has was driving his blood count down again.
As a result Gavin is back in hospital at the moment receiving chemotherapy, and then hopes to have another transplant to kill off the last of his rogue cells.
But while her dad is in hospital, Olivia is determined to raise cash for the charity which has helped her and the rest of her family – which includes her eight-year-old sister Tilly and brother Ellis who is five – over the past two years.
So she wrote and asked if we let our readers know that her uncle, Daniel Holah has agreed to run his sixth London Marathon for the MDS charity.
The disease is so rare, and the charity so small, that it has no allocated spaces, and relies on individuals who have won a place in the ballot to nominate them as the recipients for their sponsor money – and this year Daniel is the only runner raising money for them, said Lisa.
To support the charity – and Olivia’s efforts to help her dad – see Daniel’s page at: http://uk.virginmoneygiving.com/DanielHolah
Article 2
"TWO weeks ago we published a very special letter from ten-year-old Olivia Hepburn (above left) telling us about her dad Gavin who was in hospital being treated for Myelodysplastic Syndrome (MSD), a rare blood disorder which stops the body producing the right amount and quality of blood cells.
Olivia was determined to do all she could to raise cash for the charity which has helped her and the rest of her family – which includes her mum Lisa, her eight-year-old sister Tilly and brother Ellis who is five – over the past two years.
So she wrote and asked if we let our readers know that her uncle, Daniel Holah had agreed to run his sixth London Marathon for the MDS charity.
MDS is so rare and the charity so small that they receive no allotted spaces but rely on individuals to choose to support them – and this year Daniel is their only runner.
As a result of her letter to us, Olivia has raised huge awareness about MDS – and the charity has now asked her to record three video messages for their website, which will explain the disease to people from a young person’s point of view.
Meanwhile her little sister Tilly has set her own fundraising goal, said Lisa.
“She has been growing her hair for many months and has decided that she wants to donate it to The Princess Trust, a charity that makes wigs for children with cancer.
“I’m doing this for a very special reason,” said Tilly. “My dad had a bone marrow transplant in 2013 and had other medicines. He had stem cells given to him by a stranger, which I think was very kind.
“I’m very proud I am raising money for this charity, but also proud that my hair will be used to make a wig for a child who has cancer.”
And just one day after putting up her page on Virgin Money Giving, Tilly has already exceeded her target, said Lisa.
“As you can imagine we are exceptionally proud of both girls, especially as Gavin is going through a very hard time with the treatment.
“Thank you so much for highlighting our cause.”
Tilly’s fundraising page is at: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=TillyHepburn&faId=541349&isTeam=false
Daniel Holah, a friend of the family, run a Marathon for MDS in 2015 raising a total of £3,092.77. Visit Daniel's page http://uk.virginmoneygiving.com/DanielHolah
Tilly, Gavin's 8 year old daughter - also wanted to contribute - in her own way.
Tilly had been growing her hair for some time - but in 2015 she decided to have it cut off to help the Princess Trust charity - and to raise funds for MDS UK.
We let Tilly introduce her very generous event - on the 7th March. Thank you SO MUCH Tilly!!!
Tilly Hepburn's fundraising page
Tilly had been growing her hair for some time - but last year she decided to have it cut off to help the Princess Trust charity - and to raise funds for MDS UK. Tilly presented her very generous event - on the 7th March on her Virgin Money Giving Fundraising Page, and raised an amazing £858.76 for our charity. Thank you SO MUCH Tilly!
My page: http://uk.virginmoneygiving.com/TillyHepburn
Tilly said in her page:
Hi, thanks for visiting my page.
I'm doing this for a very special reason. My dad has got the disease of MDS.
My dad had a bone marrow transplant in 2013 and had other medicines. He had stem cells given to him by a stranger , which I think was very kind.
I'm very proud I am raising money for this charity, but also proud that my hair will be used to make a wig for a child who has cancer .
My challenge will take place on the 7th March at Cocos hairdresser in Maindenbower. My hairdresser Martine is doing it for me.
Thank you for visiting my page and spending your time looking
Tilly xxx
We are forever thankful to the Hepburn family for all their dedication in raising immensely valuable awareness amongst the general public - and will no doubt convince more people to come forward to register as stem cell donors.
We'd like to express our heartfelt condolences for the loss of Gavin, a wonderful man, who will be truly missed.
