Mum of disabled girl urges Sun on Sunday readers to use your passion to fight for other sick children in Charlie Gard’s name

TODAY, as Charlie Gard’s broken parents mourn their baby boy, bosses at Great Ormond Street Hospital for children will be analysing why its world-renowned reputation lies in tatters.

As someone with a child who has a rare, life-limiting genetic disorder, I would beg all of you who took sides in this scorched-earth battle to use that same passion to fight for the desperately sick children who lived.

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Use your energy, your spare cash and any influence you might have to champion the infants who survive these terrible conditions then face a world unable to deal with the consequences of them living.

They might not be as beautiful or fragile as Charlie, with a story that commands world attention, yet all of them — including my own severely disabled daughter — are let down every day by a system that is meant to provide care for the most vulnerable in our society.

I feel devastated for parents Chris Gard and Connie Yates, who fought for their baby with every fibre of their being and then, in their own words, “took the most difficult decision any parent will ever have to make”.

I feel, too, for the palliative care team at GOSH, who have tirelessly treated children I know through my daughter for years.

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I watched one of that very team’s consultants cry as she delivered a speech at a memorial service for my daughter’s friend Daisy in the beautiful chapel at the London hospital earlier this year.

Daisy died in January, aged 12, from complications of the genetic disorder Costello syndrome.

Every time someone criticised the hospital during Charlie’s battle I thought of that doctor and the nurses who packed the aisles, clutching tissues to pay tribute to this brave girl and her strong family.

But I also feel passionately for the 770,000 disabled children in the UK who desperately need a voice and each of the families behind them exhausted by their efforts to care.

It has been 13 years since my daughter Elvi was diagnosed by GOSH with the genetic disorder rhizomelic chondrodysplasia punctata (RCDP).

Battle to save boy

AUGUST 4, 2016: Charlie Gard is born, weighing 8lb 3oz.
SEPTEMBER 2016: He is diagnosed with mitochondrial DNA depletion syndrome (MDDS).
APRIL 11, 2017: Judges rule that doctors can stop providing life-saving support. Charlie’s parents Chris and Connie appeal.
JULY 10: They return to court and ask for the case to be reviewed.
JULY 24: Charlie’s parents sadly announce end of their legal fight.
JULY 28: Charlie dies.

As our beautiful girl defies life expectancy to live into her teens, we have welcomed every day spent with her.

Yet we know all too well the extraordinary toll that living with a disabled child takes on families.

Charlie had the genetic disorder infantile onset encephalomyopathy depletion syndrome.

Of the 6,000 known genetic disorders, many are life-limiting, all are life-altering.

Some, like my 15-year-old’s condition, which causes severe learning difficulties, dwarfism, cataracts and curvature of the spine, are so rare there are no support groups or charities that represent the children.

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We know of just three kids in the UK with Elvi’s condition.

Medical advances mean many children who would have died 30 years ago are now living into adulthood, but the system cannot keep up with the increased level of need that this brings.

The lack of support starts with diagnosis.

Often there is no immediate help for families who have just been told the worst news they will ever hear — that the child they dreamed they were having is gone.

David Cameron said when his son Ivan was diagnosed with the genetic condition Ohtahara syndrome he “grieved for the child he thought he was going to have”. Ivan died aged six in 2009.

In our case GOSH emailed us when Elvi was two to say she probably had RCDP.

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We looked it up on the internet and that was how we discovered the grim details of our beloved daughter’s condition.

My life changed in a moment.

I thought this way of breaking such terrible news to parents might have improved over time.

But last week I interviewed a mum whose consultant at GOSH confirmed her suspicions that her weeks-old baby boy was blind but then added: “We think he might have Norrie disease.”

She and her husband were left to look it up on her phone in the corridor outside the hospital’s pharmacy.

This was how she learned her son would probably lose his hearing and have learning difficulties and possible behavioural issues.

That was just two years ago.

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It’s not just GOSH, other parents have told me similar stories from hospitals across the UK.

Brilliant medical brains don’t always make good communicators.

There is little counselling, no meaningful support for parents at this point. It’s no wonder, like Connie and Chris, some rush to find help elsewhere.

Figures vary, but divorce is at least 20 per cent higher among parents of disabled children, which is no surprise given the stresses you are expected to cope with alone.

Your child might be non-verbal, aggressive, unable to walk or talk or dress or feed themselves.

They might need 24-hour medicine or wear nappies for ever.

You become a nurse rather than a parent.

Holidays are a challenge — my daughter hates flying and won’t sit in a cafe . . . ever.

If their condition is physically obvious they will be stared at and discriminated against.

Siblings always take second place.

The charity Contact A Family found families with disabled children are 50 per cent more likely to live in debt because one or more parent has to give up work to care for their child.

The same research found that a disabled child meant an average £300 per month extra expenditure.

These aren’t benefit scroungers — thousands of pounds of Disability Living Allowance, the main benefit for disabled children, goes unclaimed.

Just like with grief, individuals tend to react differently to this pressure. My marriage didn’t make it.

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Battles for the equipment, therapy, respite and education to which these children are legally entitled often end in tribunals that cost both the parents and the authorities dear.

There is a case going through the High Court right now launched by parents trying to get access to a £100-a-day drug that will limit the difficult symptoms of the genetic disorder PKU.

Social services are supposed to help but, with vast turnovers of staff, are at best inadequate and at worst destructive.

A 2017 survey by the Disabled Children’s Partnership found 90 per cent of families say they have to fight for services for their special needs child.

David Cameron’s government introduced Education, Health and Care Plans (EHCPs) which are meant to provide a “holistic” framework for how a disabled child is looked after by the authorities.

It was well intentioned. But he allowed local authorities to come up with their own plans, meaning every county has its own format.

Special schools which take children from different counties have to deal with ten different complicated forms.

Unlike the “statements” of special needs care they replaced, EHCPs have little legal clout.

With cuts to local authority funding, that means the likelihood of them being implemented is minuscule.

Special needs schools are the last port in a storm for parents, but they too are being squeezed.

They are expected to educate more and more children with complex needs on tighter budgets.

When I was at my lowest recently a friend offered to take Elvi for a walk once a month.

That simple act made me feel less isolated and gave me a morning to catch up with life.

So how can you help? See the box below for ideas.

Do any of these and give Charlie Gard the legacy he deserves — helping desperately ill children.