Working as a team to raise funds for a special cause
Jake Rose-Brown tells us how the Team Amali Challenge, a special fundraising day in honour of his son, came together
In May 2020, Amali Rose-Brown was diagnosed with Leigh Syndrome, a mitochondrial disease caused by a rare genetic disorder. In September 2020, he tragically died of the illness, aged just four. In his memory, his family has set up a fundraising day on Saturday 29th May 2021, to raise money for two very worthwhile causes. "Out of the awfulness of Amali's death, I wanted to find a way to support other families that are going through similar things," says Amali's father Jake.
Coming together as Team Amali
It was Jake’s own father who gave him the spark of an idea. "My dad's a bit of a runner and he suggested that he was going to do a marathon to raise some funds for the EACH Hospice, which is where we stayed with Amali for his last few days, and it just snowballed from there. I've never been a runner, but I have been jogging since Amali died and I find it very therapeutic, to be doing some exercise and have some headspace. We just decided that we should try and do something together."
The event started small but grew rapidly as more and more people offered to complete their own challenges on the same day. "At first it was just a few members of our family, and then it spread to friends and colleagues, and now we've got more than 170 people taking part in May, and there's a real range of challenges that people have taken on," says Jake.
"It started as people doing a simple sponsored run, but then broadened out: we've got people who are swimming, who are cycling, there's a volleyball marathon, some people are learning to play the cello, there's a huge range of things people have started to take on, all at their own level. I'm doing a half marathon and our youngest son, who’s 15 months old, is going to be walking 1K. There are also 14 other countries around the world where people are taking part in some way."
Jake found that many people were keen to honour Amali's memory. “After Amali's death lots of people got in contact, and stressed that they wanted to help in some way. But there's nothing you can do to a certain extent, beyond sending love. This event seemed like a nice way for people to show solidarity with our family, but also just to have Amali in mind and to try to support various charities at the same time. We spread the news a bit on social media, but mainly through phone conversations and messages when people got in contact with us.”
Raising money and awareness of mitochondrial diseases
The two charities being supported by the events on 29th May are The Lily Foundation and EACH. “The Lily Foundation is an organization that looks at mitochondrial diseases, a really rare branch of genetic disorders,” says Jake. “They give a lot of support to families, but they also invest in research as well.”
“EACH is the East Anglia Children's Hospices. Amali was in hospital towards the end of his life, and we wanted to take him home when we realized that he was going to die. But talking to his doctors and the people at EACH, they persuaded us that the hospice would be the best setting for him and for our family, so he was there surrounded by his family for the last few days of his life. Amali’s mum and I are so grateful that we did make that decision in the end, because the support that they gave us was just incredible. I don't think we'd have coped as well without it.”
“Then beyond that, they've just continued to support our family. So myself and my partner both have weekly sessions with a grief counsellor, and there's a parental support group for other recently bereaved parents. One of the amazing things about EACH is this kind of open-ended support. It's there for as long as we need or want it. I think it's just a phenomenal thing. No one wants children's hospices to have to exist. But I didn’t know about the work that they do, and it's just been really humbling and inspiring.”
When it came to organising the multiple fundraising challenges on 29th May, Jake found that Virgin Money Giving came in handy. "It's a really easy platform to use, and it's made the fundraising straightforward, just being able to send a link," he says. "I haven't organised something like this before, but you quickly learn that the logistics are quite an ordeal. But having a link with all the information and being able to go straight to a donation point is good. I like the fact as well that there's no profit involved, so the money goes to the charities, which is the way that it should be."