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Moment Harrow parents’ ‘life turned upside down’ after son diagnosed with rare disease

As parents, the health and wellbeing of your children is absolutely paramount. We often go out of our way to make sure our kids are safe, but sometimes it is out of our hands.

That is exactly what happened to one family from Harrow.

The parents of Veer Gudhka, Nirav and Kirpa, were devastated when they received the news that their “cheeky” three-year old son had a rare genetic disease called Fanconi Anaemia – a condition that reduces population of blood cells.

Upon learning of Veer’s condition in August 2019, doctors advised the disease could put Veer at risk of cancer development and therefore he will need a stem cell transplant very soon to avoid this.

Unfortunately, the Harrow family were further devastated to discover neither Nirav, Kirpa or their five-year-old daughter, Suhani, were a suitable stem cell match for Veer.

Veer with his sister, Suhani (far left), mum Kirpa (left) and dad Nirav (right)
(Image: Nirav and Kirpa Gudhka)

With only two per cent of the UK population on the stem cell register, Nirav and Kirpa have started a global campaign to increase their chances of finding a match for Veer.

They said: “The news came to us as a big shock. We were distraught.

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“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.”

Currently only 69 per cent of patients can find a suitable stem cell match from a stranger, and this number drops dramatically to 20 per cent for people of black, Asian and other ethnic minority groups.

Nirav and Kirpa have said Veer has been very brave in the midst of all his tests and check ups
(Image: Nirav and Kirpa Gudhka)

Veer’s family are working with blood cancer charities, Anthony Nolan and DKMS to encourage people from the Asian community to register as stem cell donors.

Nirav said: “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.

“All I’m asking is that people look into it [joining the register].”

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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 per cent of the world population are registered as potential blood stem cell donors.

Veer is currently able to carry on as ‘normal’, while remaining ‘under observation’ by Great Ormond Street Hospital. Nirav and Kirpa have said they are committed to “diversifying the stem cell register and giving their little boy a fighting chance of finding the best possible donor”.

For more information on Veer’s story and how to register as a donor, click here.