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.

Sam Carlisle with her daughter Elvi, 15, who has a severe genetic disorder

Sam hopes those affected by Charlie Gard’s story will fight for sick kids who survive

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.

Chris Gard and Connie Yates with baby Charlie

The sick tot died on July 28, just a week shy of his first birthday
Charlie Gard tragically dies one week before his first birthday

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…

Read the full article at the Original Source..

Back to Top