A local family of three found out that their younger son Ethan (3) was terminally ill last November, Ethan was diagnosed with a rare neurological genetic disease Battens (CLN1) With life expectancy limited mother Danielle and big brother Logan have spent a year making huge changes to their lives as well as making some wonderful memories together.
Big brother Logan who is only 6 years old wanted to help the BDFA community by raising funds for the BDFA charity which will help support other families in the future.
Logan with support of his school Cold Harbour CE primary School of Bletchley have held a dress down day to show solidarity and donations were appreciated. We were overwhelmed by the tremendous support shoe by the families of Logans School, they raised juts over £270 on the dress down day.
The school are also kindly giving the family a stall at the Christmas fate to try raise more funds for BDFA through selling the charities wristbands, badges and pens. The family hope to raise £500 in total.
In a time of grief and uncertainty Logan has shown such resilience and compassion for others, he make us all extremely proud. We wanted to raise awareness of the disease as it is so very rare, the charity receives no funding yet offer such vital lifelines, support, grants and friendship while your family faces such hardship.
Mother Danielle has also been working behind the scenes at publishing some children stories all about the brothers and disabilities within children to share awareness including PEG feeding, wheelchair use and oxygen - all thing Ethan requires.
Ethan is a strong child and takes all that is thrown at him in his stride with his daily struggles. The family have a few nice plans coming up to make some wonderful memories together.
If Logan and Ethan can show you anything its to be kind to each other and tomorrow isn’t promised.
For more information you can follow along with the family on social media @chroniclesof3adventurers across all platforms and check out http://www.bdfa-uk.org.uk/ for any information regarding Battens and how you can help.
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