Lodge of Light and Honour 2019
We are so grateful to Warwick Blake and Jason Shane who, together with the members of the Lodge of Light and Honour, raised over £6,000 for Shine for Shani at their fabulous 2019 Ladies Night.
Simon was honoured to be invited to speak to the guests about Shani and the charity. We hugely appreciate their support.
Sunday 27th January 2019
It’s a real privilege to talk to you this evening about our charity, Shine For Shani that my wife Juliet and I set up in memory of our daughter.
Our little girl lived her life as two very different people.
She was known in Great Ormond Street Hospital as Shoshana, the child who was born with a hole in her heart and without the artery connecting her heart to her lungs, who had severe heart failure and cyanosed lips.
Her case was seen by the world’s best paediatric cardiologists: as a baby she had open heart surgery, as a toddler she took an array of heart medicines and had her own nurse to see her every fortnight to check her oxygen levels.
She was the five year old who struggled to climb the stairs or walk down the street.
The kid with the blinged up wheelchair and the magic heart that didn’t work properly.
But she was also our daughter Shani.
Friendly, funny, bossy and gorgeous.
Shani was a fan of Big Time Rush, played Lego in her room with her sister Tammy, and giggled hysterically when her brother Joel woke her up.
She would scream until she was blue when dropped off at school but then spend the day perfectly forming her letters and chatting to her teachers.
Shani stood up in front of the whole school to tell everyone she was brave, but 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.
The girl who came third out of three in her sports day race but was treated like Usain Bolt.
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 indestructible.
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 for over two weeks. She never woke up. Her two year Yahrzeit was last Thursday.
The Shine For Shani Charitable Foundation was borne out of our need to find a way to make a blessing out of Shani’s memory, and out of a strong desire from our wonderful friends and family to help us achieve that aim.
We’ve tried to take Shani’s strength and courage as an inspiration to try and improve the health and the life-chances of children with heart problems, primarily by supporting research into paediatric heart conditions.
Currently, the Foundation is on its way to raising £70,000 to support a GOSH research project into heart transplant outcomes.
When children have heart-transplants, the surgeon removes their thymus, a gland that makes white blood cells called T-cells. T-cells help us fight infections and they are also the cells that can cause a body to reject transplants.
As a result, on average a transplanted heart only lasts for 20 years, leaving children who receive a heart-transplant in a life-limiting situation.
Professor Tessa Crompton from the Great Ormond Street Hospital Institute of Child Health wants to improve the short- and long-term success of child heart transplants.
Her team want to find out, initially in mice, if transplanting part of the donor’s own thymus along with the heart, could stop the recipient’s immune system from attacking the transplanted heart and improve normal immune system behaviour.
If successful, this project would provide better outcomes for heart transplant children and potentially help children with other transplants, such as kidney transplants, prolonging the life of the transplanted organ, helping the child to avoid further major surgery for longer and reducing the need for additional drugs.
We spent some time with Professor Crompton this week and, although there is a long path in front of her, she believes that there is a real possibility that her research could help to save children’s lives.
Alongside this wonderful evening tonight, Shine For Shani has been raising money through our amazing Shine walking team, last year’s football marathon and bake sales, our daughter Tammy’s Bat Mitzvah poetry book, our friends raising money in Shani’s name through sponsored skating, screen silences, birthday donations and many more challenges and fun to come.
Thank you so much to Jason and Warwick for deciding to support Shine For Shani and thank you all for coming this evening and supporting the Lodge, Shine For Shani, and children with life-limiting heart conditions.