GOSH Evening of Thanks 2019
GOSH very kindly asked Juliet and Simon, Shani's parents, to talk at their annual Evening of Thanks for bereaved parents, along with actor Martin Freeman who read an extract from A Christmas Carol.
Wednesday 11th December 2019
It’s a real privilege and honour to talk to you this evening about our daughter Shani, the Brighter Future Fund that my wife Juliet and I set up in her memory, and how we have so far raised over £100,000 for GOSH.
It’s not often that you get an opportunity to talk to a group of people that can truly empathise with the tragedy and trauma that we went through and who, equally, have a desire to build something life-changing, life-affirming and life-saving out of the ashes of that despair.
Our hope this evening is that in some small way our story can help and inspire you to find the strength that you need to help the children of Great Ormond Street Hospital, and, perhaps, to provide you with some ideas that we can all use to raise even more funds.
So let me tell you a little about our little girl, Shani, born on 5th April 2011 in Barnet Hospital, North London as a seemingly perfectly healthy 10lb baby.
It was a routine check just before we brought Shani home that picked up a heart murmur, and we were referred to GOSH for a scan a few weeks later.
The scan revealed that Shani was a bit of a miracle baby.
She had what she came to call a ‘magic heart’, but Dr Graham Derrick our consultant called it pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries. I always preferred ‘magic heart’!
Our baby had grown in utero without the artery linking her heart to her lungs and with a large hole in her heart. Somehow in the womb she had grown extra arteries connecting to her lungs to ensure that she received some oxygenated blood.
Miracle though it may have been, it was not sustainable, and Shani was going to need multiple major open heart surgeries – she had the first when she was just a few months old to create a synthetic valve in her heart and use her extra arteries to connect it to her lungs.
Most people have an oxygen saturation level, the level of oxygen in the blood, of 95-99%. Below about 90% means you’d need additional oxygen support. Shani, even after surgery, had sats of around 75%.
Shortly before Christmas 2012, when she wasn’t quite two, Shani went into GOSH with heart failure. On top of her other issues her heart had decided to stop pumping properly. She was in Bear Ward for two weeks until New Year’s Eve and we saw the best of what Great Ormond Street can offer in terms of the care that we were given and the smiles that everyone puts on children’s faces over Christmas time.
We’re from a Jewish family, but you can’t beat a bit of tinsel and a visit from both Olympic cyclist Victoria Pendleton and a snowman!
On Thursday 20 December, we were told by our consultant that Shani was not going to make it: that she wouldn’t recover from heart failure. Yet, with help from doctors in Israel, Shani was put on an array of heart medicines that slowly got her heart working enough for her to return home and to grow into a gorgeous, funny and rather bossy little girl.
Over the next four years, she visited Great Ormond Street Hospital often for multiple catheter procedures, her case was seen by the world’s best paediatric cardiologists, and her own nurse came to see her every fortnight to check her oxygen levels.
During that time, we got to know Dr Derrick and the nurses on the Walrus day ward well and realized the special care and attention paid by GOSH nurses and doctors to the children in their care – it felt like Shani was their special little friend!
And their expertise was epitomised by the time that one of the senior sonographers recognized Shani from the scan of her heart rather than from her face!
Shani grew into the kid with the sparkly blinged-up wheelchair and the magic heart that didn’t work properly. She struggled to climb the stairs or walk down the street and she would scream until she was literally blue when dropped off at school but then spend the day perfectly forming her letters, chatting to her teachers and making wonderful friendships.
Shani was a fan of tweenage TV programmes like Big Time Rush, played Lego in her room with her sister Tammy, and giggled hysterically when her brother Joel woke her up.
When she was five, Shani stood up in front of her whole school to tell everyone she was brave, not because of her heart condition but “because she didn’t run away when she saw a big dog”.
She was the girl with the silver swirly dress who tried to steal the limelight at the start of Joel’s Bar Mitzvah party but begged to go home half way through, utterly exhausted.
The girl who came third out of three in her sports day race but was so proud and was treated like Usain Bolt by her school mates and teachers.
Whose eyes shone when we lit the Chanukah candles and sung the songs she learned at nursery.
We knew she was fragile but we somehow also thought she was invincible.
But by November 2016 Shani was starting to find it harder to breathe and in the following January, aged five and three quarters, Shani had further, complicated, open heart surgery. She was in intensive care at GOSH for over two weeks. She never woke up.
Through the hell of the following days, weeks and months, it was the support and love from our wonderful family, friends and Jewish community that helped us stay afloat, and it was the need to be strong for our older children Joel and Tammy that pushed us to slowly build a semblance of routine and normality back into our lives, but, as I imagine many of you also found, it was the inspiring idea of GOSH’s Brighter Future Funds and our need to find a way to make a blessing out of Shani’s memory, to make something good out of something so terrible, to help save other children where Shani can no longer be saved, that led us to start fundraising, as Juliet will tell you.
Tammy put it like this in one of her poems ‘My Shining Star’:
She is an inspiration to us all,
To live your life, however small.
Two years ago, I sat where you are sitting now.
To be completely honest I was wondering what on earth I was doing there, surrounded by strangers, back at the hospital, just a few months after Shani had died.
In fact, I sent a miserable photo to my two best friends clutching a glass of wine and looking morose! But something clicked as the evening progressed – it may have been the wine, or meeting the lovely Jason Isaacs or the very special candle lighting moment – and I actually felt changed.
Looking back I can now pinpoint the moment, and it was none of those I mentioned, but it was when two parents, just like us, stood up and talked about the loss of their child, James, and how they used his memory to inspire them to make a difference. Halfway through the speech, James’ mother started to cry and there was a moment when it seemed like she could not continue, and who could blame her.
Then all the parents in the room started clapping and that support and unified feeling gave them the strength to finish their words. That was the moment Simon and I realised that with Shani’s Brighter Future Fund we were able to become part of something special.
A few months earlier, my friend Jude had an idea.
She wanted to take part in the Shine Night Walk and she asked me and some of our female friends if we wanted to join in.
We could train together and raise money and we could do it in Shani’s memory – it was Jude’s idea to call it Shine for Shani. Some of the friends had been touched by cancer and all of us were feeling the loss of Shani.
So we joined it all together and fundraised for both Cancer Research and Shani’s Brighter Future Fund.
For me personally it was a very important project – our weekly, ever growing training walks gave me time out with my friends as well as a reason to get outside and exercise.
And I took the reins for the publicity too – writing press releases, using Facebook to boost our fundraising and managing our Just Giving page .
Astonishingly in the end the team of 20 ladies raised £28k.
Simon and I had many discussions after this about how we could do something more in Shani’s name, and the Evening of Thanks came at just the right moment.
We realised that we wanted to do something big and life changing in her memory – just as Shani had changed so many lives herself.
And we feel that we are very lucky, we have a hugely loving and supportive extended family, a group of friends by our side in good times and bad, and a wonderful synagogue community that forms a big part of our lives.
How could we build on this, find something that Joel and Tammy could also engage with and be part of the special place that is GOSH?
With the help of the team at Great Ormond Street charity – first Marisa, then Jonathan and now Lily, who has been a brilliant link with the hospital, we selected a cardiac research project, gave ourselves a large fundraising target of £70,000 and threw ourselves and everyone we knew into our newly formed Shine for Shani charity.
Our first project focused on heart transplant outcomes, looking at the effect of transplanting T-cells from the thymus to reduce rejection of the transplanted heart as a child grows older and we even visited the lead researcher Prof Tessa Crompton to understand more and had a fascinating visit to the laboratory at the GOSH Institute of Child Health.
Friends and family took on individual fundraising challenges for us – including mini-mudders, a sponsored screen silence, a roller-skating challenge – and Shani’s school also supports our charity every year now with a sponsored event, like their Chopsticks Challenge.
A number of people asked for donations to the charity in lieu of gifts for birthdays and special occasions, including my own Dad’s wedding.
And we had great support from a Lodge Ladies Night, raising over £6k. For her Bat Mitzvah, Tammy wrote a poetry book called a Rainbow of Rhymes and raised over £2000 selling them.
We are a family of doers – and we were excited to organise our own events too.
Inspired by our football-loving son, in summer 2018 we organised a football marathon. A 12-hour 5-a-side match with people signing up for half hour slots throughout the day.
We had teams of adults, boys and (a few) girls and, despite it pouring for part of the day – a buzzing amount of spectators. Alongside it, our daughter and 2 friends ran a 12 hour bake sale and a raffle, and in all we raised over £10,000 that day.
We boosted our fundraising with a brochure of corporate sponsorship and a whole team of friends were involved from start to finish.
Again the publicity and organisation took lots of time and energy, which was good for our emotional health and wellbeing – I stepped out of my comfort zone and even went on a radio show to promote our event.
But most importantly, we were all talking about Shani, all the time, and not only when we were feeling sad and tearful. We love our physical challenges, walking, running, football – something about exercising our own hearts connects so closely with what we want to do to help GOSH children have healthy hearts too and Shani’s belief that she had a “magic heart”.
Our Pulse Challenge, which was the big event we did this year, encapsulates that.
We wanted to build on the Shine for Shani walk that we did just after Shani died, but to make one of our own – an ambitious idea (as we soon realised once the planning was underway). Again we assembled a team of friends – to plan the route and starting points, recruit marshals, design t-shirts, organise a finish line party, pull together a brochure of corporate sponsorship, get raffle prizes and attract 100 walkers and runners.
We were so proud that we managed to achieve those numbers and more.
The 20 mile walk started from GOSH back to our hometown of Borehamwood, via a beautiful scenic route.
Lily was there at the start to see us off and we had a massive team of marshals along the way to keep us on track. We also had a group start at 13 miles and a large number of families and youth (including Joel and Tammy) starting at 5 and ¾ miles, chosen to reflect Shani’s age when she died.
It was a special day with a wonderful community spirit, the sun shone, we only mislaid a couple of walkers (we found them again!) and most importantly we raised over £45,000 pounds – about twice as much as we had expected, with a huge part from the sponsorship pages set up by the participants. Our plan now is to take the templates from these events and use them for further football marathons, and Pulse Challenges, as well as a dance/exercise event, keeping with our healthy hearts theme for raising money for cardiac patients.
So what have we learnt from our fundraising efforts so far:
Appreciate all donations and fundraisers – we loved what last year’s parents said at this event about how they always try to be there whenever a friend does something for their son’s Brighter Future Fund and we aim to do the same wherever possible.
Find a fundraising niche – choose events you and your family really connect with.
Build a team of people around you – it doesn’t have to all be on your shoulders, and target people outside of your immediate circle so you’re not always asking the same people for money. And don’t be shy about asking business for sponsorship or donations – people rarely say no!
Lastly, use these events to create a beautiful, positive, community spirit around the memory of your precious child, which can inspire you to do more, helps the grieving process, and reclaims some small amount of joy and hope out of deep tragedy and despair.
Thank you so much for listening and thank you to GOSH for their support and for inviting us to be part of this very special evening.