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 charity Anthony Nolan, 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.
“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. There also are no perfect matches on the global stem cell registers as it stands, and so the family are now campaigning hard to find the matching unrelated donor that Veer needs to survive.
Veer is currently able to carry on as ‘normal’, while remaining ‘under-observation’ by Great Ormond Street Hospital.
“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.
“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.”
Veer’s Asian heritage means it’s more difficult for him to find a matching stem cell donor.
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. Only 2% of the UK population is currently on the stem cell register.
“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.”
Sarah Rogers, Regional Register Development Manager at Anthony Nolan, said: “Veer is a sweet and playful little boy who has touched hearts around the country through his family’s active social media campaign.
“He’s a bundle of energy and we want to keep him this way. A cure could be out there for him if his matching donor made the decision to join the stem cell register.
“Every single person who signs up to the register has the potential to give hope to someone like Veer in need of a lifesaving stem cell transplant. We urgently need more people from Asian backgrounds to sign up, to ensure we can find a match for everyone that needs one.
“Together, we can work towards a future where nobody is waiting for their match.”
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.
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.
It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.