52 Lives

Life #15

Request: Swimming with dolphins, tickets to concerts or help to raise funds for Batten disease

This week, we would like to help a family from Nottingham, UK - Sarah and Andrew Dawkins and their twin boys, Freddie and Louie.

Until the age of two, Freddie and Louie were like any other healthy, energetic boys. At age 2 they were diagnosed with autism, and by the time they were 3 they were both blind, despite having been born with perfect sight.

After months of testing, they were diagnosed with Late Infantile Batten disease. It is an inherited neurological disorder which emerges in early childhood. The condition leaves youngsters blind, bedridden, and mentally impaired and the life expectancy is between 8-12 years. There is no known cure.

Freddie and Louie are now 8 years old. Sarah, a trained nurse, and Andrew, a furniture maker, have left work to care for their gorgeous boys. It is hard, and it will become even more challenging as the children’s health and abilities continue to deteriorate. But they are trying to make the most of every day they have together.

Request: Swimming with dolphins, tickets to concerts or help to raise funds for Batten disease.

The family was nominated by their good friends Maureen and Suzy, who gave us some ideas as to what would make the biggest difference to their lives. So we have a big ask this week!

1. A Holiday - Ideally, we would like to send the family on a holiday, while Freddie and Louie are still able to travel. The boys love swimming and Sarah and Andrew have been saving for a long time to fulfil a dream to take them swimming with dolphins in Gran Canaria. If Gran Canaria isn’t possible, a UK break would still be great!

2. Tickets - The boys love music, so we are also looking for tickets to concerts and music festivals - Olly Murs is their favourite.

3. Donate - And finally, Andrew is running the London marathon to raise funds for the Batten Disease Family Association. He has a target of 20,000 and we’d like to help him reach it. You can donate here

What We Did

As well as concert tickets to see Olly Murs, sourced with the help of a wonderful charity called Rays of Sunshine Children's Charity, we managed to give the boys the holiday of their dreams!

An incredibly kind and generous man called Richard Harwood came forward and offered to pay for the entire holiday for the family. But he also went one step further - we asked Andrew and Sarah to estimate how much the holiday would cost. They gave us a very conservative amount, and Richard suspected they were feeling uncomfortable about asking for too much. So he doubled it.

Freddie and Louie have just returned from the their trip and it was the holiday of a lifetime.

Richard, thankyou so much for giving them this wonderful experience.