Shine for Shani
Improving the health and life chances of children with heart conditions
Shani Berman was born with a complex congential heart defect - a large hole in her heart and no valve linking her heart to her lungs. Surgeons at Great Ormond Street Hospital implanted a tiny Gore-Tex tube into her heart where the valve should have been in what was intended to be the first of a number of open heart surgeries to normalise her heart and circulation. Then at 20 months Shani suffered from heart failure and her family was told she would not recover.
Yet, remarkably, over the next four years, Shani grew into a lively little girl, with a "magic heart". She went to school, made friends and was a happy, inspiring and joyful child.
From the time she turned 5 however, her oxygen levels depleted further, and the doctors decided to operate - tragically, Shani did not survive the complex operation.
Her family want to find a way to make Shani's memory into a blessing and to raise money to help Great Ormond Street Hospital and other research to help other heart children live full and happy lives.
We are delighted to have reached our first target of raising over £70,000 to support a vital piece of cardiac research at Great Ormond Street Hospital Institute of Health. The research, led by Professor Tessa Compton, is looking at ways to improve the short and long-term success of heart transplants in children, by studying the effects of transplanting thymus tissue from the donor, along with the heart, to see if this helps stop the immune system attacking the transplanted tissues. We are proud to be associated with is project which has the potential to help so many people.
We have now also started fundraising towards a new important project - to raise over £13,000 to buy 6 new syringe pumps for GOSH's Cardiac Intensive Care Unit - a place very close to our hearts as it is where Shani spent her final days.
Fundraising in Shani's memory
* 20 strong team of marathon walking women
* 12 hour football marathon
* delicious bake sales
* Pulse Challenge - 20 mile walking event
* wedding and birthday gifts
* sponsored hair cuts, roller skating, screen silences, half marathon runs
* fundraising by primary & secondary schools
* New Years Day fry up
and much more...
Pulse Challenge 2019
On Sunday 8th September, the sun shone on over one hundred walkers and runners who got their rambling shoes on to join in the sponsored walk, supported by a huge team of volunteer marshals and ending with a fabulous finish line party!
The inaugural walk started at Shani's hospital, Great Ormond Street and wound its way past some iconic London locations as well as through beautiful parks and little-known routes before finishing in Shani's home town, 20 miles later, in Hertfordshire.
The walk was joined by those opting to walk or run a half marathon and eager younger ramblers who joined at the 5 3/4-mile distance which symbolically references the age Shani was when she died following complex open heart surgery in 2017.
Shani's mum, Juliet Berman says,”Our target was to raise £70,000 towards a vital piece of research into heart transplant outcomes and the incredible contribution from the walkers and their sponsors has helped to smash our target – now we are ready for our next project".
Juliet, walked the 20 mile route, while Shani's siblings, Joel and Tammy, ran and walked the 5.75 miler - Shani's dad, Simon, headed up the marshaling team and coordinated logistics.
Juliet added "It was so exciting to walk through London and see our friendly marshals along the way and chat with the other participants. The time flew – although our legs were rather less happy the next day!”
PRESS RELEASE - July 2018
RAINSWEPT 12 HOUR FOOTBALL MARATHON RAISES OVER £10,000 FOR GREAT ORMOND STREET HOSPITAL IN MEMORY OF 5-YEAR-OLD SHANI BERMAN
• 509 goals scored by 180 players of all ages in Shine for Shani charity match at Watford Power League
• FT Team Walrus: 260: 249 Team Bear
Sunday 29 July 2018: It hadn't rained in two months but the heavens opened to cool the 180 players in an epic football marathon, organised by Simon and Juliet Berman and a team of friends to raise money to support research into children’s heart conditions at Great Ormond Street hospital. The event, running from 9am to 9pm, featured girls and boys aged between three to fifty something who battled it out for the coveted World Cup lookalike trophy.
Shani was always told she had “a magic heart,” after she was born with a congenital defect which meant she had a hole in her heart and no valve linking her heart to her lungs. In risky open-heart surgery, doctors fitted a tube, which worked until Shani was 20 months old, when she suffered heart failure. Remarkably, the little girl pulled through, despite very low oxygen levels, until she was aged five, when doctors again had to operate. Tragically, 18 months ago she did not survive the operation.
The family’s charity – Shine for Shani – is raising money to fund cardiac research at the children’s hospital and aiming is to raise £70,000 over two years to support research into child heart transplants. Mrs Berman has already helped to raise £29,000 for Cancer Research UK and Great Ormond Street Hospital. Alongside 19 other women, they took part in the ‘Shine Walk’, a 26-mile route around Central London. Shine Walk was the inspiration for Shine for Shani. The Football Marathon has already raised a remarkable £10,000 with donations still coming in.
The two football teams were named after the wards Shani Berman spent time when at GOSH; Walrus and Bear and there was a keen competitive spirit between the teams, managed by Simon Berman and son, Joel, 14.
Simon and Juliet's daughter, Tammy (12) ran the marathon bake sale with master bakers, Asher Friedman (11), Eli Radomsky (11) and friends. The mouth-watering treats included red velvet cupcakes, sticky chocolate brownies and Shani’s favourite sparkle biscuits and kept over 500 people energised over the day. Whilst there were a few soggy bottoms on the pitch none could be found on the cakes stand as they raised over £650 alone.
Numerous raffle prizes were generously donated by local businesses ranging from jewellery, restaurant meals to nights in hotels. Companies also bought advertising in a match day programme raising further lifesaving funds. And whilst the players were on the pitch, families enjoyed arts and crafts, glitter tattoos, a refreshing downpour of rain and the occasional top quality top corner finish.
The event was in for a thrilling finale as after 11 hours of play there was only three goals in it. The final two teams battled it out in an unlikely victory for Walrus who had been trailing by 30 goals for much for the day.
FT Team Walrus: 260: 249 Team Bear
VAR was not in use at Watford Power League.
To find out more about Shine for Shani and help support research into cardiac research, visit the Berman’s fundraising page at http://www.justgiving.com/shaniberman
Rainbow of Rhymes Poetry Book
A poetry book designed, compiled and authored by Tammy for her Bat Mitzvah. It's packed full of beautiful poems written by Tammy and her friends and family as well as some classic favourites. A very special way to treasure the memory of our precious Shani.
Make a Donation
Donations can also be made by cheque or charity cheque made payable to The Shine for Shani Charitable Foundation. Contact us for further information.
Or donate online via our JustGiving page: