Shilbottle dad Jake Shaw writes fundraising song for charity which has helped his poorly daughters

Sisters Nala and Teddi were diagnosed earlier this year with life threatening genetic disease.

Jake Shaw and Ally Wallace were devastated when daughters Nala, now three, and Teddi, one, were diagnosed with Metochromatic Leukodystrophy (MLD) in April.

It is a rare genetic condition which affects speech and mobility, and is also life-limiting.

Nala is unable to receive treatment and is therefore not expected to live beyond childhood. However, there is hope for her younger sister and she is currently receiving life saving gene therapy treatment in Manchester.

A keen guitarist, Jake recently picked the instrument up again and wrote the song ‘Lay You Down Easy’ dedicated to his firstborn, as a way of raising awareness of the disease and to help deal with his emotions.

Working closely with friend Andrew Elsdon, the song was professionally recorded and is now available on all major platforms.

All money earned from streaming and downloads of the song will go to MLD Support UK, a volunteer-run charity helping families suffering with MLD.

The charity works closely with those affected by the disease, running conferences and fun days for families. It also offers support to parents via a Facebook support group.

Jake, from Shilbottle, said: “It’s really important. I want to try to raise awareness of the disease and raise money at the same time from these downloads to go towards the MLD support charity because they are a massive help when you don’t know about this disease and you’ve got nowhere to go.

"The Facebook groups and support really help you deal with the situation.”

The wider community is also hosting fundraisers to help the Shaw family pay for medical expenses and travel costs.

The award-winning Indian restaurant Lal Khazana in Alnwick is hosting a set menu this Wednesdsay, October 19, to raise cash for the family.

It is charging customers £20 for an appetiser, starter, main course and side orders. And for every meal purchased, £5 will go to the Shaw family.

The deal is available to customers dining in or taking away, to try and raise as much cash as possible.