March 2014
Life # 15 - Twin boys from Nottingham
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.
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
Do you know anyone that might be able to help?
