Family Of Young Boy With Rare, Life Threatening Illness Fight For Funding
The family of a young boy suffering from an incredibly rare, life-threatening health condition are attempting to raise awareness about the illness by starting their own charity.
Five-year-old Aaron Hunter suffers from ROHHAD which affects just 10 children in the UK.
It's caused his weight to increase to over 6 stone and means he never feels full. He also suffers from serious breathing problems meaning he always hooked up to oxygen.
His mum Elisabeth started charity the ROHHAD Association earlier in the year after finding out no one was willing to fund research into the syndrome as it's believed to only affect 100 people world wide.
But without the research she believes her son's life is at risk.
She said: "The charity itself has been set up to raise awareness about ROHHAD primarily and also to raise funds for research and for a support group in the UK.
"Because the condition is incredibly rare and affects only 10 children in the UK there is no funding for research and Aaron and other children are very likely to lose their lives if we don't do this.
"The consultants at Yorkhill are very supportive and we hope we can raise enough funds to start medical research."
His 11-year-old sister Lauren is also getting involved having released her own charity single.
She wrote and recorded the song called Light The World For You with the help of Singer Station Performance school.
A music video has been uploaded to YouTube and the family are also selling the track online with all proceeds going to the ROHHAD association.