Stop hoarding hand gel, pleads mother of boy with rare illness
THE mother of a two-year-old boy with a rare life-threatening condition has pleaded with panic buyers to stop hoarding the antibacterial products she needs to protect him from infection.
Rome Daniels has a mitochondrial disease called ECHS1 deficiency — a genetic disorder so rare he is believed to be the only child with it in England.
Doctors told his parents that Rome is unlikely to live past the age of 13 and will not be able to walk unaided.
The degenerative condition makes him susceptible to infection and his mother Ashliee Mitchell, 26, said medics had told her his life could be at risk from coronavirus.
Rome has spent much of his life in hospital but his parents are now caring for him at home in Clapton, where they are isolating to protect him from Covid-19. He was discharged from hospital for the first time last October but days later caught a respiratory virus and had to go back.
Ms Mitchell has joined calls from the Prime Minister for shoppers to stop stockpiling essential medical goods. Ms Mitchell and Rome’s father, Adrian Daniels, use antibacterial hand gel before they clean his medical equipment. She said: “We can’t get basic things like hand sanitiser so we’re able to clean Rome’s tube in his stomach or give him medicine.
“This puts Rome at greater risk of catching an infection. The whole situation is very scary knowing that if Rome catches this virus it could take his life. I get regular updates from different support groups that have been sending out warning information and have said mitochondrial disease patients’ risk levels have now doubled. It’s been very hard but we have to find a way to get through this for Rome’s sake. It’s his life that’s in danger every day.”
⬤ Ms Mitchell is raising funds for Rome to have experimental gene therapy treatment in America.
Donate at gofundme.com/f/ get-rome-to-texas