Partly Cloudy

Partly Cloudy

max temp: 4°C

min temp: 3°C

ESTD 1874 Search

Southwold: Alexis, 5, to receive care from charity funded by author

09:45 01 May 2014

Alexis, with parents Katrina and Adrian, and sister Eva.

Alexis, with parents Katrina and Adrian, and sister Eva.

Archant

A boy from Southwold will be one of the first to be helped by a new nurse funded by an author’s charity.

shares

Five-year-old Alexis Ruthven was six months old when he was diagnosed with Duchenne muscular dystrophy, a condition that causes muscle weakness.

About one in 3,500 boys have the condition, and it rarely affects girls.

Alexis, his parents Adrian and Katrina, and his two sisters Eva, two, and Beatrice, one, used to travel down to Great Ormond Hospital in London for an annual health review.

Mr Ruthven said: “We’d have to leave early and come back late.

“It would be a whole day and we’d 
sometimes stay down there.

It was such an upheaval at the best of times.”

As Alexis gets older he would be going more than once a year.

But now, Alexis and his family now only have to travel to Addenbrooke’s hospital as a specialist children’s neuromuscular nurse will be created by Roald Dahl’s Marvellous Children’s Charity.

The full-time post has been created and funded for its first two years by the charity.

Cambridge University Hospitals’ NHS Foundation Trust has in turn committed to fund the role for a further three years.

The nurse will provide specialist 
information, emotional support and care, so that families are not left to cope with their child’s condition alone.

The nurse will become the essential link between families and the hospital, and other services based in the region.

Mr Ruthven said: “The Roald Dahl nurse will be an excellent point of contact for us, especially because Alexis has recently started on a new course treatment and he will need close clinical monitoring.”

“Thanks to the charity for making our lives a lot easier and easing the worry and stress.

“Now there’s a nurse who can understand, it makes our lives a lot easier.”

shares

0 comments

Welcome , please leave your message below.

Optional - JPG files only
Optional - MP3 files only
Optional - 3GP, AVI, MOV, MPG or WMV files
Comments

Please log in to leave a comment and share your views with other East Anglian Daily Times visitors.

We enable people to post comments with the aim of encouraging open debate.

Only people who register and sign up to our terms and conditions can post comments. These terms and conditions explain our house rules and legal guidelines.

Comments are not edited by East Anglian Daily Times staff prior to publication but may be automatically filtered.

If you have a complaint about a comment please contact us by clicking on the Report This Comment button next to the comment.

Not a member yet?

Register to create your own unique East Anglian Daily Times account for free.

Signing up is free, quick and easy and offers you the chance to add comments, personalise the site with local information picked just for you, and more.

Sign up now

St Elizabeth Hospice launch of a brand new challenge to win your wedding at Glemham Hall

Couples waiting to tie the knot can enter a competition run by St Elizabeth Hospice to have their big day all paid for.

Former Met police officer Colin Sutton with his dog Jasper

Many might describe Colin Sutton as a ‘proper copper’ - the sort with blue blood running through his family’s veins.

Mick McCarthy, Manager of Ipswich Town shouts instructions Bristol City v Ipswich Town

Ipswich Town boss Mick McCarthy says he is as frustrated and agitated as supporters after this afternoon’s 2-1 defeat at relegation-battling Bristol City made it four losses from five games in all competitions.

The Belstead House in Pinweood, Ipswich.

Frustrated councillors who object to plans to build 155 homes in their parish are threatening legal action against planners.

Fire crews free trapped horse. Library image.

Three fire crews helped to release a horse trapped inside a horse box this afternoon.

Terry Brown stands next to a sign he erected to urge BT to take action

A Finningham man has claimed his father “could have died” after BT left his elderly parents without signal for a fortnight.

Southwold

A Suffolk GP surgery has been rated as Outstanding following an inspection by the Care Quality Commission.

Most read

Fred Olsen Travel Sale

cover

Click here to view
the Fred Olsen
Travel Sale

View

Most commented

HOT JOBS

Show Job Lists

Topic pages

Streetlife

Great British Life

Great British Life
MyDate24 MyPhotos24