A four-year-old boy with a rare genetic disorder has begged “someone to be his superhero” and “save his life” in a heartbreaking video appeal.
Seriously ill Veer Gudhka needs to find a matching stem cell donor to give him the best chance of survival.
The youngster, from Harrow, northwest London, is one of just 150 people in the UK to have inherited the life-changing illness Fanconi Anaemia.
Although Veer was diagnosed last August at just three years old, tests last week showed the boy’s blood cell counts are now declining at dangerously low levels.
His worried parents Nirav, 40, and Kirpa, 37, are now launching a desperate appeal for people to join the stem cell register.
In an emotional video they released today, Veer says: “Can you help me? [I need] my lifesaver. Will you be my lifesaver? Will you be my superhero?”
Nirav, a business analyst, said: “Outwardly Veer is the same happy-go-lucky, and healthy-looking boy we have always known and loved but unfortunately, underneath this his blood counts have been steadily dropping over the course of this year.
“We have known that he will ultimately need a transplant since his diagnosis, but the predictions were that he would probably hold out for a few years.
“But with his blood counts dropping recently, it became quite concerning and implied he does need a transplant sooner than hoped.
“It’s been really shocking and scary for us – we knew that this was coming and we thought we had some time to find a donor, but now all of a sudden we need a match straight away.
“We know that finding a donor is like finding a needle in a haystack, so we are campaigning hard.
“We hope that he can get a match because fundamentally the transplant would be a life-changing miracle for Veer.”
In December 2018, Veer became worryingly lethargic, and tests showed that his blood counts were extremely low for his age, which eventually led to the diagnosis of Fanconi Anaemia nine months later.
Doctors were confident Veer needed a stem cell transplant at some stage, so parents and five-year-old sister Suhani were all tested but unfortunately none were a match.
There were no perfect matches on the global stem cell registers, and so the family are now campaigning to find the matching donor that Veer needs to survive.
Veer’s Asian heritage also means it’s more difficult for him to find a matching stem cell donor.
Nirav added: “We feel so unprepared and are very worried for what lies ahead.
“He’s been a real soldier through his numerous blood tests and other procedures. He definitely lives up to the meaning of his name which means brave.
Since learning that Veer needed a transplant, the family have raised nearly £10,000 for charity Anthony Nolan and recruited thousands of people to join the register.
But now that the deadline to find a donor has been cut short, the family needs the public’s help more than ever.
Nirav said: “We’re asking for people to do whatever they can to help us by registering or sharing our story.
“Many of us have intentions to help with things like this, but then life takes over and the idea gets forgotten. Please just act straight away and register as a stem cell donor.
“If everyone did something towards this then we can make such a big impact and save Veer, alongside other people in need.
“Time is running out for Veer, and for many others like him.
“As a family, we’d like to see him continue to pass milestones such as going to school and just live a normal life.”
Rebecca Sedgwick, National Recruitment Manager at Anthony Nolan, says: “The tale of brave Veer has touched hearts around the country, inspiring almost 700 selfless individuals to sign up as stem cell donors. Time is now critical for Veer and his family, so we’re hoping that anyone thinking of joining acts right away.”
“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 South 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.”
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.
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.
Find out more at: www.anthonynolan.org/HelpVeerNow, or on www.helpveernow.org and https://www.facebook.com/helpveernow/