Hitchin grandmother’s push for rare skin condition
A GRANDMOTHER from Hitchin is on a mission to raise money for a rare skin condition which her nine-month old grandson suffers from.
Irene Levy, of High Dane, Hitchin, and daughter Laura have planned a number of events to raise awareness and money for the genetic skin condition called Ichthyosis.
Mekhi Levy Barber, who suffers from the condition, has to be bathed twice a day and creamed every two hours to prevent his skin from drying out and cracking.
There is currently no government funding for the genetic illness, so Irene and Laura have set out to raise it themselves.
Irene has organised a walk with her Ramblers group for this weekend and there is also a charity club night to be held at Bliss in Hitchin next month.
“It’s about raising the awareness as much as the money,” said Irene.
“The parents often seem to lead the way as it’s such an unknown condition, so it would be good to make people sit up.
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“Mekhi needs a lot of care and spends a lot of time in hospital, but he seems to be doing well.”
Walkers can meet at 9.30am at Portmill Lane Car Park, Hitchin for the 10km walk to Whitwell on Sunday.
There will be a stop off at Emily’s Tea Rooms in Whitwell for cream teas half way round.
The event at Bliss, which features a mixture of R&B and funky house and an appearance from Big Brother contestant Victor, will be held on May 1.