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FAMILY OF HARROW THREE YEAR OLD WITH RARE GENETIC DISORDER APPEAL FOR MORE ASIAN STEM CELL DONORS

January 31, 2020

A press release.

The family of a “cheeky” three-year-old from Harrow, diagnosed with a rare genetic disorder, are appealing for more people of Asian descent to sign up as stem cell donors. Working with blood cancer charities Anthony Nolan and DKMS, the family want to diversify the stem cell register and give their little boy a fighting chance of finding the best possible donor.

 

Veer Gudhka is one of only a few hundred people in the UK to have inherited a life changing illness called Fanconi Anaemia which results in a decreased production of all types of blood cells.

 

He was diagnosed in August “by chance”, after a period of being very lethargic in December 2018, which led to the discovery that he had low blood platelets. Veer’s energy levels returned to normal in the new year. However, investigations continued, and in August he was diagnosed with the serious genetic disorder.  Veer is currently able to carry on as ‘normal’, while remaining ‘under-observation’ by Great Ormond Street Hospital.

 

“The news came to us as a big shock. We were distraught” recalled Veer’s father, Nirav. “We didn’t expect anything of that nature when we were called back in August. All of a sudden, our otherwise perfect little world was turned upside down.”

Veer’s doctors have predicted that he’s extremely likely to need a stem cell transplant quite soon. Veer’s mother Kirpa, father Nirav and five-year-old sister Suhani were all tested but unfortunately none of his family are a match for him. So the family are now campaigning hard to find the matching unrelated donor that Veer needs to survive

“Veer is a cheeky boy, for sure! He creates strong bonds with everyone he interacts with, young and old. He’ll chat to anybody!  He is an adventurous and energetic three year old, and will try his hand at anything,” explained Nirav.  This is evident in the short HelpVeerNow campaign video that the family have produced to share Veer’s story and appeal for people to join the donor register.

 

“He’s been a real soldier through his numerous blood tests and other procedures. He definitely lives up to the meaning of his name (Veer means brave).”

 

Speaking of the impact Veer’s illness has had on his family, Nirav said: “Veer’s a little brother. His big sister Suhani is five and knows that Veer has got Fanconi Anaemia, and so needs ‘new blood’. She’s too young to understand the full extent of Veer’s condition but has comprehended that he needs a generous donor to help him.

 

“As much as we don’t want it to take over our lives, it has. We know that finding a donor is like finding a needle in a haystack, so we are campaigning hard.”

 

Only 2% of the UK population is currently on the stem cell register.  Currently, only 69% of patients can find the best possible match from a stranger, and this drops dramatically to 20% if you’re a patient from a black, Asian or ethnic minority background. Veer’s Asian heritage means it’s more difficult for him to find a matching stem cell donor.  His chances of finding a match improve every time someone joins the donor register, especially if they are of Asian origin.

 

A stem cell match could be found from anywhere in the world, so the family are campaigning globally.  In December 2019, a weekend-long swab drive was held in Veer’s ancestral town in India.  Once a potential donor signs up in their respective country, they join a worldwide register.     However, only 0.4% of the world population are registered as potential blood stem cell donors.

 

“It’s shocking that the stats are so low, given how straight forward both registering and donating are. There couldn’t be an easier way to save someone’s life, so why aren’t there more donors? There’s clearly a lack of awareness, particularly within Asian communities, so we are trying our best to increase awareness, to help not only Veer, but countless other people from all backgrounds. That’s why we’re sharing our story – it’s not just for Veer.” said Nirav.

 

“All I’m asking is that people look into it.” [joining the register] “From there there’s no reason why you wouldn’t.”  As Kirpa appeals in the campaign video, “You have the rare opportunity to save the life of someone like Veer, so why not take it?  There really couldn’t be an easier way to save a life.”

 

There is an urgent need to diversify the donor registers so the #HelpVeerNow campaign is raising awareness among different communities through social media, encouraging people to join the register, and organising swab drive events across the UK and beyond.

 

There have been several high profile cases in recent years of British Asians seeking stem cell donor matches.  “We were delighted to hear the news that at the end of 2019, young Jayden Dhillon found a match”, said Nirav.   “It proves that campaigns like these do work, and gives us hope that through our efforts we can find a match for Veer, or others like him.”

 

Every person who joins the register has the potential to give hope to someone like Veer in need of a lifesaving stem cell transplant.

 

 

Find out how to register as a donor:  www.HelpVeerNow.org

Facebook/Instagram/Twitter:  @HelpVeerNow

#HelpVeerNow

 

 

ANTHONY NOLAN

Anthony Nolan recruits people aged 16-30 to the stem cell register as research has shown younger people are more likely to be chosen to donate and offer better survival rates for patients.

 

They also carry out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.  Every day Anthony Nolan gives three people a second chance at life.

 

It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.

 

For more information, please call the Anthony Nolan Press Team on 0207 424 1300 or email press@anthonynolan.org. For urgent out of hours media enquiries, call 07881 265 285.

 

Find out more at www.anthonynolan.org/HelpVeerNow

 

 

DKMS

 

DKMS recruits people in the UK aged 17-55 and in general good health.

DKMS is an international non-profit organisation that has registered more than 8 million people as potential donors.  The vision of DKMS is to ‘delete blood cancer’ and other blood disorders.

 

It costs £40 to recruit each potential donor to the register, so DKMS relies on financial support.

For more information, visit http://www.dkms.org.uk

One Comment leave one →
  1. January 31, 2020 3:01 pm

    Reblogged this on Samosas And Chips.

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