Hugs from Henry
Up and down the country, there are thousands of people doing good deeds every day, and we decided to celebrate the great work that charities undergo with a regular feature on Tuesdays, to tie-in with #CharityTuesday on Twitter. This week, we caught up with Elsbeth Hallam from Hugs from Henry to find out more...
Where are you based and what geographical areas do you support people in?
The charity works from Plymouth and supports families throughout the UK.
How did the charity come to be founded and how do you support people?
Hugs from Henry was opened in April 2015 after my husband and myself had been though our own cancer journey with our son Henry. In 2012 Henry was diagnosed with stage 4 neuroblastoma, a cancer of the nervous system, he was 3 years old. The clinical trial that Henry joined meant that we had treatment two hours away from our home town of Plymouth. At the time of diagnosis, I was 26 weeks pregnant, life as we knew it stopped and we just had to survive. It soon became apparent that neither my husband or I could work, bills still needed to be paid and living away from home and in the hospital is difficult as food bills are much more expensive. We were very luckily supported by our friends and family, my husband's work gave him 6 months off and then he worked from the hospital. Emotional support was also very lacking through Henry's journey, we really felt that there needed to be a support network from someone who knows what we were going through.
After treatment we felt more needed to be done to support families going through the journey of neuroblastoma. Hugs from Henry was born.
As Henry's mum I wanted to give families a story of HOPE, so many children we know have died from neuroblastoma, three alone during treatment. We went through the 16 months of treatment and tests questioning if Henry was next, we did not know of any long term male survivors from the disease. I now visit families throughout the UK, bringing a small 'hug in a bag' and give parents a way of being able to talk about treatment and fears. I also organise visits to hospitals with Disney princesses and Marvel superheroes, to help bring some smiles to children stuck in hospital.
Hugs from Henry has also provided family away days this last year, this means that families who have had neuroblastoma or have lost a child to the disease can have a small weekend away. It gives families the chance to talk to each other about treatment and life during and after cancer.
Since opening the charity we have supported over 15 families financially, though financial grants towards bills and towards small wishes such as iPad and toys.
Hugs from Henry also want to support children's cancer research and this will be the focus of the charity this year. Working alongside larger charities including Solving Kids Cancer, Neuroblastoma UK and Cancer Research UK, to find better treatments for children with neuroblastoma and one day to hopefully find a cure.
How many people do you have working at the charity?
The charity is run by me, I am a registered nurse specialised in emergency care. I have since left my post to ensure the charity grows and supports more people. We have 5 trustees who are all dedicated to also making a difference. The charity's backbone is the volunteer team, the Hugs team, all working mothers and grandmothers, who volunteer their time freely and want to help as many families as possible. They attend the away days and hospital visits, they have true dedication to the charity.
How can people support you?
Wear Purple for Neuroblastoma was started by myself while Henry was in treatment. After learning that purple was the recognised colour of neuroblastoma I asked friends and family to spread the word and share awareness of this awful disease. Over the last 4 years the idea has spread and the charities now also encourage their followers to do it. We ask that people wearing purple share their photos and donate £1 to the charity.
Have you faced any challenges along the way?
Starting the charity has had many challenges, firstly and most importantly for Henry. The charity is in his name and he has been through so much. Juggling Henry's complex needs and hospital visits and running a charity has been very hard. On a personal level dealing with families who are losing their children is emotionally distressing and often difficult to deal with, but I also feel that this is why I must carry on.
Do you have any charity events coming up and where can people find out about these events?
This year we hope to hold another family away weekend as well as a children's cancer ball. To do this however we need to increase our fundraising. The charity is doing several challenges including the three peaks in 24 hours, sky dives, marathons and Purple awareness day.
Is there any advice you could give to other charities?
Advice to other charities? I would say be imaginative, do something different and keep going. It can often feel like you are all swimming in the same pool but communicate with other charities rather than fighting against each other.