Mother of teen who fought rare disease without complaint vows to raise awareness
The mother of a 13-year-old boy who died after fighting a rare genetic condition has vowed to do everything she can to raise awareness of the disease.
Regan Nash, from Cradley Heath, Sandwell, suffered from Mitochondrial Disease MTT1, which affected 98 per cent of his body and has no treatment or cure.
The disease meant Regan suffered a number of conditions such as global development delay, balance and speech problems, sleep apnea, autism, epilepsy and curvature of the spine.
He fought the condition bravely for 13 years, never complaining or asking why, until Regan lost his fight on February 7 aged just 13.
His mother, Melanie Lowe, and two younger siblings also suffer from less severe forms of the condition.
The family have decided they would like to purchase a memorial bench in one of Regan's favourite places, Haden Hill Park, which holds special memories for them and for Regan.
Regan would go there as often as he could, and Melanie got married there too.
The family intend on getting the bench regardless of any donations and stress they are not asking for donations, but only responding to requests they have received in messages.
They also plan on creating a memorial garden at home for his family, especially his younger brother and sister, to try and comfort them.
Melanie said: "He put up an amazing fight like he always does.
"Honestly couldn't be prouder of his 13 years, he's put up an amazing fight.
"My heart has gone with him and our life will never be the same again.
"Still cant believe he's gone, can't believe I'm saying this, but fly high big man."
Regan's mum and family also added they would like to thank the staff of Birmingham Children's Hospital, especially the intensive care ward, for everything they have done to try and save their boy.
Regan had a big love of pandas, firemen, bin men and West Bromwich Albion, especially Baggie Bird who he loved meeting.
The club honoured Regan at the Hawthorns on February 14 during their match against Blackburn Rovers.
A tribute was displayed in the 13th minute of the game and fans held a minute's applause.
Melanie said: "Thank you everyone who clapped and sang, it was beautiful and heartbreaking to watch."
The page for donations towards the memorial bench can be found here.
