Sejal and Manoj Thakrar live in Stanmore, Middlesex, with their four-year-old son Shiv, who has Duchenne Muscular Dystrophy. They talk about Shiv’s diagnosis, setting up their Family Fund ‘Smile with Shiv’, and the 14-strong ‘Leap4Shiv’ team taking on the ‘Make Today Count’ Skydiving event for the charity:
Shiv was born in February 2011. It will always be the happiest and proudest day of our lives.
He started crawling and walking a little later than normal, but we were assured he was just a late developer and did not think anything of it.
When Shiv was two, we started having concerns about his health, and were referred to Great Ormond Street Hospital.
After eight months of agonising tests, a week after Shiv’s third birthday, we received the news that would change our lives forever. April 8th 2014 is the day that will haunt us for the rest of our lives. We sat numb, our hearts broke, our world turned upside down as we received the diagnosis- we could see it in black and white, Shiv has Duchenne muscular dystrophy, and we knew there was no treatment or cure.
We found ourselves in a race against time; we couldn’t sit back and wait for a treatment or cure to materialise, we needed to do something. We understood that urgent funding was needed for research, but raising awareness of the condition was also key. After speaking to Muscular Dystrophy UK, scientists, other families, and parent organisations, we realised that there was hope, so we decided to set up a Family Fund. It was one way we could help raise funds without having to set up our own charity, which would have been hard for us to take on.
On January 19th 2015 we launched our Family Fund, ‘Smile with Shiv’. Our precious boy has the most amazing smile, which everyone talks about, and we realised that we wanted people to support us, help us fight Duchenne, and ‘Smile with Shiv’. We set up a website, Facebook, and twitter account – we knew the power of social media.
We are overwhelmed by the support our family, friends, and even strangers have shown us. Our first fundraising event was a ‘Ray Ban Charity Day’ hosted by good friends who own a local opticians. We raised over £2,000 and got our fist local press coverage in the Harrow Times. Since then, we have had over 30 fundraising events and even had the opportunity to raise awareness at a major Hindu festival attended by 70,000 people in September 2015.
Next month, on 26th February, a ‘Leap4Shiv’ team, including Sejal and 13 of our friends and family are joining ‘Team Orange’ for the ‘Make Today Count’ skydiving event. They are jumping out of a plane at 10,000 feet; with the hope to raise over £5,000.
Coming to terms with Shiv’s condition still remains hard, and tests us on a daily basis – our lives have completely changed, everything is different, but our boy is still the same – cheeky, fun and always smiling. So far, ‘Smile with Shiv’ has raised over £85,000 for Muscular Dystrophy UK’s Duchenne Research Breakthrough Fund, working to ensure an effective treatment and cure is found for Shiv and others suffering from this devastating 100% fatal condition.
As well as raising vital awareness and funds for Duchenne, we have been involved in some of the great campaigning work with Muscular Dystrophy UK, including faster access to potential treatments for Duchenne, such as Translarna. We are also involved in various meetings with the Department of Health, and we are part of the Advisory Group for the Clinical Trial Capacity Audit, all of which we believe are of great importance.”
Find out more about our Family Funds.
The charity is here to help. For support and information on Duchenne muscular dystrophy please contact our friendly helpline team who are available 8:30am – 6pm Monday to Friday.