-2.9 C
Harrow on the Hill
Friday, December 9, 2022
HomeHealthFamily of Harrow three-year-old with rare genetic disorder issue urgent plea for...

Family of Harrow three-year-old with rare genetic disorder issue urgent plea for help

The family of a “energetic” three-year-old from Harrow, diagnosed with a rare genetic disorder, have been left “completely shocked” after being told he is in urgent need of a stem cell donor.

Together with blood cancer charity Anthony Nolan, they are launching another urgent plea for more people of South Asian descent to join the stem cell register and give their little boy a fighting chance of finding the best possible donor.

Family of Harrow three-year-old with rare genetic disorder issue urgent plea for help Harrow Online
Veer and his family

Diagnosed last August, 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. His doctors originally predicted that he was likely to need a stem cell transplant within three years, but recent tests have revealed Veer’s blood cell counts declining rapidly warranting the need for an urgent stem cell transplant.

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.

Nirav explains: “We have known that he will ultimately need a transplant since he was diagnosed in August 2019, but the predictions were that he would probably hold out for a few years. We had hoped that would be the case, if not that, he would rebound and prove as some anomaly to the stats.

“We feel so unprepared and are very worried for what lies ahead.”

Family of Harrow three-year-old with rare genetic disorder issue urgent plea for help Harrow Online
Veer celebrating his graduation from nursery with his family. He had been looking forward to him starting at his sister’s school in September but it seems highly likely that he will miss that particular milestone

Nirav continues: “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.”

Veer’s medical team have said that it may be possible to buy some time by putting him on a steroid course to boost his blood counts, but Veer’s current levels suggest the steroids may not take effect.

“We are potentially a short period away from transplant now” says Nirav.

Family of Harrow three-year-old with rare genetic disorder issue urgent plea for help Harrow Online
Veer and his sister Suhani

“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)” say Nirav.

Veer’s Asian heritage means it’s more difficult for him to find a matching stem cell donor.

Nirav continues: “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.”

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.

Since first publicising Veer’s story at the start of the year, when the family thought they had the luxury of time, Veer has inspired hundreds of potential donors to join the worldwide stem cell register – including a female battalion of the Indian army.

The family have also been fundraising for fundraising for Anthony Nolan, hosting a virtual extravaganza in May which raised a phenomenal £9753.14 and recruited and additional 165 potential donors onto the stem cell register.

On the support the appeal has generated Nirav says: “We’ve had so much support from so many people, friends, family and even strangers.

“Over lockdown someone who heard of our campaign was inspired to host a whole day extravaganza to raise money for Anthony Nolan, but more importantly to raise awareness of our appeal. It is an example of the generosity we have seen in the campaign.”

Knowing that this is the last possible chance to encourage Veer’s potential donor to join the register Nirav says: “Please, please, just do it… and do it straight away. Many of us have intentions to help with stuff like this, but then life takes over and the idea gets forgotten. Please just act straight away. Time is running out for Veer, and for many others like him.”

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.”

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.

Find out more at www.anthonynolan.org/HelpVeerNow

www.helpveernow.org

https://www.facebook.com/helpveernow/

#HelpVeerNow