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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

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Charlie Gard Foundation to help kids with rare illnesses

This news post is over 6 years old
 

​Foundation will be up and running in next few weeks say parents

A charity is to be created in memory of Charlie Gard following a flood of donations from well-wishers.

The parents of the tragic tot, who died last month from rare genetic illness, said they will use the £1.3m to help children with similar medical conditions.

Chris Gard and Connie Yates had appealed for cash to pay for overseas medical treatment for their son before the courts banned them from moving Charlie from hospital.

More than 84,000 people donated money to the cause.

The parents of the 11-month-old fought a lengthy legal battle with Great Ormond Street Hospital (GOSH) to allow him to be taken to the US for treatment.

But they dropped their action after Professor Michio Hirano, the American neurologist who had offered to treat him, said it was too late for the treatment to work.

Gard and Yates said in a joint statement: "In the following weeks we will be setting up The Charlie Gard Foundation - a foundation that will help other children with mitochondrial diseases, and rare childhood illnesses.

"Too many children are losing their fight against rare medical conditions, which emphasises the need for more research, and we hope we can help deliver this through Charlie's foundation.

"There needs to be more clarity for parents about parental rights when it comes to making life-saving decisions about their children.

"Access to medical treatment, and expert clinicians, should never be denied if funds are available. We will be looking at ways in which we can help make things clearer for families and hospitals alike.

"We feel that the foundation will be a lovely legacy for Charlie, and we hope that you will all continue to support us in honouring the life of our little warrior as he helps other poorly children and their families."