A DISTRAUGHT woman whose daughter suffers from a rare disorder which requires her to be fed through her jugular vein claimed the uncertainty over special water allowance limits are an insult to the ill.
Callie Walsh has now challenged Taoiseach Enda Kenny and Environment Minister Alan Kelly to come to her Cork home and personally see how impossible it will be to manage without special allowances.
The Passage West mother warned that she now dreads the potential cost of water bills because of Lauren's condition.
"Lauren (24) has a very rare illness called Ehler Danlos Syndrome (EDS)," Callie explained.
"She is fed through her jugular vein for up to 18 hours a day. We use a huge amount of water keeping her area spotlessly clean and antiseptic. We also need water for preparation for all Lauren's needs, including washing our hands dozens of times a day.
"Lauren is in full intestinal failure so we are talking about having to flush the toilet in our home up to 50 times a day."
Callie is furious that the Government has decided to defer for two years the illness list under which special water allowances are assessed.
"I was so annoyed - it was absolutely shocking. I would love the Government, Mr Kenny and Mr Kelly to come to our home and see Lauren attaching her feeding tube and then explain to us why they would defer the list for two years.
"I have no problem paying for water, but it is the uncertainty for people who are caring for a very sick patient about how much our bills are going to be after the first two years - that is what is troubling us.
"We are also concerned that Lauren's illness is so rare that it won't be included on the list of medical conditions when that is finally published in two years."
Irish Water has indicated it will be 2017 before a comprehensive list of specific medical conditions allowing households to qualify for subsidised water bills is finalised.
Until then, households will have water charges capped at assessed rates until price controls end on December 31 next year.
EDS is caused by a defect in the structure and production of collagen which is critical to tissue formation and endurance.
Collagen, a structural protein, is what makes human tissue so tough and durable.
There is no cure for EDS, which can be life-threatening.
Lauren was just 15 when she was diagnosed with EDS after her weight had plummeted from nine stone to just five stone.