A seven-year-old boy who suffers with a rare disorder requiring round-the-clock care has had his school bus seat taken away.
Cadan Geraghty is the only recorded child in the world to have been diagnosed with Jacobsen Syndrome and a Duplication of Chromosome 12, leaving him "profoundly" disabled.
Mum Joanne and dad Brian, from Oranmore, Galway, Ireland, previously paid €350 (£300) per year for their son's seat and are furious the option has been removed, because he is now deemed to live too close to school.
Mum-of-three Joanne said the family has been left with the prospect of trying to find alternative transport at short notice, reports GalwayBeo.
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She posted an open letter on Facebook to Bus Éireann, Minister for Education Norma Foley, Minister for Transport Norma Foley and all TDs in Co Galway.
She said: "Today I am very angry, I’m angry at the department of Education's decision.
"To make school transport free for 'all', leaving children like my oldest son with no seat this coming year even though we have paid the full amount for the past three years."
Cadan subsequently spends a lot of time in both Temple Street and Crumlin Children’s hospitals and "has had more than his fair share of surgeries on the brain, stomach, and bowel".
He also needs extensive physio, as well as being visually impaired and nonverbal.
As such, his parents, who are full time carers as well as being in employment, are faced with "many challenges".
Joanne said she would gladly continuing paying the €350 fee if the service hadn't been taken away.
She went on to say she works night shifts and so doesn't often get to bed until 7am, leaving dad Brian to ensure Cadan gets his bus and the couple's two other sons also get to school.
She said Cadan is no-longer eligible for the 53-seater bus due to him being a concession applicant who lives less than 4km (2.5 milles) from the school.
The mum said in previous years there was always more than enough room on the bus but it is now full, though there is not enough demand for a second one.
Joanne asked that the Government consider allocating the seats to family who had previously availed of the service first.
She said that this was just the latest example of what families of those with special "fight everyday for".
She cited getting basic care for their love one as well as the fight to get carers allowance, the home equipment and services their son needs amongst many others in a list she calls "endless".
To help Joanne and Brian with his complex care needs, you can follow and donate to his iDonate page here.
