Readers may remember earlier in the year OnTheWight highlighted the case of two year old Islander Avah Flynn, who has a rare terminal disease known as ‘Hurlers Disease’ or Mucopolysaccharidosis.
Her Great Grandmother, Sue Standish Murphy, has been back in touch with an update on Avah’s progress and information about an event taking place on Sunday afternoon that she hopes Islanders will support.
Sue told OnTheWight,
“My Great Grandchild, two year old Avah Flynn has now completed nearly six months of Chemotherapy and Cord Blood (from a donor in the United States) and despite grueling side-effects, this life prolonging treatment seems to be turning a corner.
“Because there are only 54 people in the UK suffering from this terrible and usually terminal complaint, it is very underfunded, so we are officially now fundraising to help with research in isolating the rogue genes that cause it.”
‘Frozen’ carnival float
Throughout the summer, Sue’s family and friends have been taking a float to Carnivals across the Island.
Sue told OnTheWight she gave up her holiday money to design, build and decorate the float and make the costumes.
Apparently, they’ve picked up the Silver Award at every one and nearly all Firsts. Although they’ve been able to raise awareness for the charity, Carnival rules mean they can only collect money for the various Carnival Committees of towns they are parading in.
Fundraising event on Sunday
To help raise much needed money for the MPS Society, Sue had to think of another way to reach the public.
She went on to say,
“We’ve been granted permission from County Hall, to have our Float down by the Pavillion in Ryde on Sunday Afternoon. My girls (Grandaughters and Nieces) will be in their costumes, and Avah will be with us.
“All the escorts will be collecting and there will be thousands of Scooterists around so hopefully we will make the Charity lots of money.”
If you’re able to, please give generously on Sunday.
