On the 23^rd August 2015 my best mate Hugh Taylor had his first child with his wife Demet.  After just a few short weeks of blissful parenthood Melina was diagnosed with Spinal Muscular Atrophy Type 1.

SMA is a genetic disease that causes muscle degeneration in babies, meaning they lose their ability to move, swallow and smile and ultimately stops them from being able to breathe.  It is a savage and aggressive disease and 95% of babies with SMA type 1 do not reach their first birthday.  Melina is a little fighter and will hopefully turn 2 this August :).

As Melina has become progressively more poorly Hugh and Demet have spent many weeks at Helen and Douglas House Children’s Hospice in Oxford.  They have helped to make her short life as happy and fun as possible but have also been hugely supportive of Hugh and Demi.  While at Helen House Hugh & Demi know Melina is getting 24/7 quality care and this allows them just a few hours respite – a chance to catch up on some sleep, or have a meal together or just watch a film on a comfy sofa.

The Hospice receive only very minimal funding from the government and it is only through private donations that they are able to survive and continue to support families like Melina’s. 

If you wish to know more of Melina’s journey, please go to  'Melinalittlemermaid' Facebook page.