YOUNG Keir Platt’s legacy is inspiring change.

Keir, from Astley Bridge, lost his fight against a rare genetic disorder in 2014 just two before his 14th birthday.

His mother Michelle Tonge has drawn on her family’s own experiences for a book explaining the heartbreak of parents facing the death of a child from illness or a life-limiting condition.

Follow the Child has been written by Sacha Langton-Gilks and includes contributions from parents including Miss Tonge.

The launch was part of a campaign by six national charities who are pressing ministers to make sure that the choices seriously ill children and families can make about their palliative and end-of-life care are based on their needs, wishes and best interests.

Miss Tonge hopes the book will promote understanding about families with children who have such conditions and help other parents.

The book was launched at the House of Commons.

Miss Tonge, who lives in Astley Bridge, said: “More than 200 people attended the launch of the book at the House of Commons.

“Myself and other mothers were invited to write a bit about our own experiences for the book.

“The book is moving, but it is more for those who work with children and for parents.”

Keir was diagnosed with metachromatic leukodystrophy (MLD) in 2005 — a condition which affects the nervous system and cannot be cured.

It meant that he lost the ability to walk and talk at an early age.

His parents were told Keir would not reach the age of ten, but, against all odds, he made it to his teenage years.

To mark what would have been his 18th birthday, his family staged a special event to fundraise in his memory last month.

Miss Tonge said: “While I was writing, I remember details such as after Keir died, I remember mopping the floor and thought 'what am I doing?', when everything is falling apart around you. Things like that would pop into my head — it is about helping parents by talking about subjects which people don’t talk about, such as funerals and providing practical advice.”

She added: “The book highlights that children’s palliative care is different across the country, it is a postcode lottery, and in some places it is absorbed into adults’ palliative care. We are lucky in Bolton because we have community nurses who do not work nine until five. But parents are often are having to fight for support, from education to health, which I could do, but not all parents are able to do that.”

In memory of her son, Miss Tonge is going to raise the issue of the care of children with life-limiting conditions with MP David Crausby, to try to ensure that providers across the country understand their needs and their families.

Miss Tonge says Keir’s smile continues to inspire her and the rest of the family. She said: “I have always been so proud of him and to know he is now helping to make a difference to other families."