My darling granddaughter suffers from a rare genetic disease – and she is being let down by a system that must change


THE support a society provides for its most vulnerable is a measure of its compassion – indeed, I would say its civilisation.

A kind and fair country ensures that everyone can live a fulfilling, productive life, regardless of the challenges they face.

Yet today, across the country, thousands of children with special needs are being let down by the system.

My ten-year-old granddaughter, Chloe, is one of those children.

She suffers from an extremely rare genetic condition called SYNGAP1 Syndrome. She is non-verbal, has numerous seizures every day and suffers from a number of other distressing symptoms.

It took a long time just to get a diagnosis and begin to understand what was wrong.

It was not until we enrolled Chloe in the 100,000 Genomes Project — a British initiative that studies the role genes play in health and disease — that we found out the cause of her problems: A single error in her DNA.

But with this news, the agony of uncertainty was replaced by the pain of knowledge — the knowledge that Chloe has an extremely serious health condition for which there is no cure.

I grew up on a council estate in South London. But I got to go to grammar school and receive a great education. It changed everything for me.

As I said when I was first interviewed about Chloe, I won the lottery of life. Chloe didn’t even get a ticket.

Lack of resources
Chloe is a wonderful, happy child but she needs a lot of support. My daughter Sarah, Chloe’s mother, works full-time to look after her.

Yet sadly, as a result of a lack of resources in my part of the world, the East Riding of Yorkshire, Chloe missed out on 40 days of teaching during the pandemic — over and above what she missed because of the lockdowns. That equates to eight weeks of schooling at a vital time in her educational life.

Even last year, post-pandemic, she missed at least seven separate days of teaching, again because of lack of resources. Any disruption or break in the continuity of Chloe’s life has enormous impact on her.

You can imagine how stressful it is for her and for her parents to have to experience such a chaotic school schedule.

Sadly, her case is not unusual. Many of her classmates had — and continue to have — the same experiences, as do thousands of children across the country.

Sarah works tirelessly to give Chloe the best quality of life she can. It is a full-time job, and though rewarding — Chloe is a wonderful, beautiful child — it is exhausting.

Parents, teachers, teaching assistants, mental health workers, carers and a host of others do incredible work to ensure these children get as much help as possible.

But they are struggling to provide for everyone.

As The Sun has pointed out in its powerful Give It Back Campaign, the resources simply are not there.

In recent years there has been a huge increase in demand for Special Educational Needs and Disabilities (SEND) services.

This is due to a number of factors, including the growth in population, better detection of conditions such as autism, and longer life expectancy for those with disabilities. All of these put pressure on the system.

But the funding to support these services has not kept pace with the demand. Local authorities are carrying a multibillion-pound deficit in their provision for kids with special needs.

They need at least £4.6billion more in additional annual funding merely to stop the crisis spiralling further out of control.

Urgent action
On top of that they need more cash to invest in future services, to cope with any additional increase in need in the years to come.

In January, I held a debate on this subject in the House of Commons.

It was very well attended and 30 MPs contributed, sharing their constituents’ experiences of a system in crisis.

The overwhelming consensus was that we cannot make do and mend with the available resources. It is time to make sure we properly look after our most vulnerable children.

On Wednesday the Chancellor will deliver the annual Budget. It is a perfect chance to announce an increase in funding.

That is why I, along with 62 other Conservative MPs, have written to Jeremy Hunt, calling on the Chancellor to ensure SEND services get the funding they need.

We all know that times are tough and that money does not grow on trees.

But there can be few things more important than giving proper support to our most vulnerable.

I hope the Chancellor listens to the thousands of families and staff across the country, including many Sun readers, who are so deeply worried about the future their children will have if urgent action is not taken.

There is no time to waste.