David Davis MP gives an interview with The Daily Mail on his family’s fight with the rare genetic condition SYNGAP1
As published in The Daily Mail:
Men of David Davis’s background and generation have a particular way of crying. In his case, the voice thickens and he pauses, as if suppressing deep sorrow. Then he clears his throat and takes another gulp of coffee.
It’s only when he lifts his head towards the window that you can see there are tears in his eyes.
The former Brexit Secretary, an ex-SAS reservist raised on a tough South London council estate, relishes his reputation as the hard man of British politics.
Yet he cannot help but cry when he thinks of his five-year-old granddaughter, Chloe, who suffers from a rare, incurable genetic condition. ‘The first time I held her, she had a beautiful smile that would melt your heart,’ says Davis, 70. ‘We had no idea what was to come.’
He wells up again as he recalls holding her as a newborn. He proudly shows us the screensaver on his phone: a picture of the laughing, curly-haired girl wearing a pretty floral dress. While he has fleetingly mentioned before in public that one of his five grandchildren is disabled, the Tory MP has never revealed the terrible extent of the rare condition from which she suffers until now. Nor has he spoken of his determination to use his own money to help find a cure.
Just six months after she was born, Chloe’s mother, Sarah, a scientist and Davis’s younger daughter, noticed something wasn’t right.
It would be four more years before the little girl would be diagnosed with the heartbreakingly complex and little-understood genetic disorder Syngap1 syndrome.
Just 77 cases have been diagnosed in Britain and fewer than 300 in the U.S., though there may be thousands of undiagnosed cases. Davis revealed to us the moment his ever-watchful daughter started to worry. ‘Parents measure every yardstick: when [babies] sit up, crawl, turn over from one side to another,’ he says.
‘The first thing Sarah noticed was that Chloe could turn one way but not the other. Eventually, we found out one of the Syngap1’s first signs are that it weakens a baby’s muscles.
‘Then there were other signs. I have vivid memories of Chloe sitting up with cushions all around her so she didn’t fall over. Crawling was late. Walking was very, very late. Normally, children start around a year, for Chloe it was 32 months.’
Desperate to understand her daughter’s agonisingly slow development, Sarah criss-crossed the country talking to specialists.
Neither London’s Great Ormond Street or Addenbrooke’s in Cambridge — both world-famous children’s hospitals — were able to shed any light on Chloe’s condition. Undaunted, Sarah spent hours at night scanning the internet. She joined an online group called Swan — Syndromes Without A Name — for parents whose children had mysterious illnesses.
Chloe, who can’t communicate except for a few basic hand-signals and has spoken only 20 words in all her life, can now have more than ten seizures a day.
These vary from fluttering eyelids and moments of total distraction to a ‘drop attack’, in which she collapses. Last week, for example, Chloe had a fit on a bus and was unable to respond for ten terrifying minutes.
The other symptoms include acute sensitivity to any loud noise — even a vacuum cleaner — an inability to sleep for more than a few hours and uncontrolled ‘sensory meltdowns’.
No wonder Sarah and her husband, Andy — who both worked in the charitable sector until Sarah gave up her job to care for Chloe full-time — have often been close to despair.
One drug treatment the doctors put Chloe on turned the happy little girl — who lived in a world of her own — into an angry child who banged her head on the floor, punched and bit herself.
It was devastating for her parents. They changed the drugs and got their child back, but the seizures still continued.
So Sarah, a biologist, and her fellow scientist husband, enrolled Chloe into the 100,000 Genomes Project. This was launched in 2012 by then Prime Minister David Cameron, whose own son, Ivan, died aged six, after suffering from cerebral palsy and severe epilepsy.
The aim was to harness whole-genome-sequencing technology to uncover new diagnoses and improved treatments for patients with rare, inherited diseases and cancer.
The project mapped Chloe’s genes last year.
Finally, there was a breakthrough. ‘Last year we got a letter saying they thought they had the answer and wanted to speak to us,’ Davis recalls. ‘We were waiting on tenterhooks.
‘Then the agony of uncertainty was replaced by the pain of knowledge.’
The Genomes Project team confirmed Chloe had an incurable genetic condition, about which little — including the prognosis — is known.
Davis says of the genetic anomaly: ‘They said it’s like having the Bible with just one letter missing from the entire text.’
Speaking to us in his Commons office, the MP for Haltemprice and Howden is determined to do everything he can to find the Holy Grail: a cure for Syngap1.
Davis is planning to make his own donation to help fund research at the pioneering Patrick Wild Centre at Edinburgh University, which is looking into causes and cures for autism-related conditions.
While many of his colleagues have been focused on the Tory leadership contest — he was pipped to the job by David Cameron in 2005 — Davis has been concentrating on Chloe. He has rarely spoken publicly about his family, except in passing. But now he is revealing his emotions in a way neither of us, who have known him for more than two decades, expected.
Davis chokes up again explaining the passion behind his family’s united mission. ‘Look at me,’ he says, gesturing at pictures in his office of his wife, Doreen, their three children and referring to his career near the top of British politics.
‘I won the lottery of life. Chloe, though, didn’t even get a ticket.’
Chloe can suffer terribly. But Davis says: ‘There are moments of pure delight. Her smile, her voice when she finally uttered a few words. She can’t really speak even now at nearly six, which is a tragedy as words are the language of love.
‘She has said “da-da”, then “mumumum”, but words come and go to her — when they do come, it is a moment of sheer brightness in our world.
‘But then they disappear. I’m guessing here, but I think when she has seizures it wipes out the words.’
He shows us a video on his laptop of Chloe wading through a knee-deep freezing stream near his Yorkshire home, which has become a refuge for Sarah and her family.
Another video shows Chloe supported by a swimming instructor in the local pool. Sarah’s and grandmother Doreen’s proud voices can be heard in the background.
Little wonder that, with her love of water, Chloe’s favourite movie is Dolphin Tale, which she repeatedly watches with her grandad.
The family has a tender joke about Chloe. ‘We say that she’s a dolphin trapped inside a little girl’s body,’ Davis grins.
He adds: ‘Chloe loves water. Children with Syngap1 usually do.’
They have poor proprioception — the awareness of the position and movement of the body. A classic example is the inability to feel whether they have their feet on soft grass or hard cement without looking. ‘They enjoy water as it’s directly on their skin. ‘That’s why she loves to swim and make dolphin noises.’
Having learned a programme called Makaton that uses signs and symbols to help people to communicate, she can ‘sign’ the words ‘more’, ‘finish’ and, of course, ‘dolphin’.
The family’s dream is that one day Chloe will swim with dolphins.
Davis talks lovingly and proudly of his four other grandchildren and two other children, Rebecca and Alexander. But it’s easy to see why Chloe is so close to his heart.
He springs from his office armchair to a projector at the other end of the room, and shows us charts illustrating the groundbreaking gene-therapy research being done at the Patrick Wild Centre and funded entirely by charity.
‘I know it’s dangerous to be too optimistic,’ he says, ‘but this is the mapping of a condition called Fragile X, which is very similar to Syngap1. There are some indications you can improve the condition later in life.’
The complex medicine can be bewildering for most people but Davis and Doreen, who have been married for 46 years, both have molecular science degrees.
He explains that the process involves creating a replacement for the faulty gene and then putting it in a harmless virus that carries the gene into the cell, where it can take over the function of the faulty gene. ‘It’s bit like a Trojan horse, carrying a replacement gene. It’s being developed across the board for a variety of diseases. The basic tools are being developed, so the step to fix Syngap1 is smaller.
‘We may not be able to give Chloe back her babyhood, but her teenage years, perhaps . . .’
Chloe’s diagnosis with Syngap1 came just a month before Davis resigned as Brexit Secretary last summer, feeling himself no longer able to support Theresa May’s EU withdrawal deal. Perhaps at that point he felt that he had other priorities in life?
‘I realised I’ve got time now do something for my granddaughter and for my family,’ he says.
He describes wife Doreen as his — and the family’s — ‘rock’.
She talks each evening to their daughter, Sarah.
It’s often a small window of peace because Chloe and sleep are still strangers, despite failed attempts with various drugs designed to help her. No doubt it was Doreen who suggested Sarah’s family move to Yorkshire to be closer to Davis and Doreen, which they are planning soon.
The new house will have a special sensory room for Chloe, to keep out all the harsh noises of the modern world that frighten her and to cocoon her in the sounds of family love that soothe her.
Contemplating the challenge to fund research for Syngap1 and other genetic conditions, Davis reminds us he has a proud history of fighting and winning what others thought were lost causes.
Underneath the pugilistic parliamentary bruiser, Davis has always been a softie. But now he’s steeling himself for the biggest fight of his life — the epic battle to find a cure for Syngap1.
The stakes could not be higher.
This is Chloe’s story — and gene mapping technology could, perhaps, give her a better future — but there are thousands like her who suffer from a debilitating genetic condition.
As research progresses, David Davis prays that treatment will become available and bring a cure for future Chloes.
THE Patrick Wild Centre at Edinburgh University has launched a new fund which investigates the impact of the Syngap1 gene on brain development. You can support this important research at www.patrickwildcentre.com/make-a-donation