Left: Rebecca Conlon, centre, Munster Mum of the Year with her son Eamon and Penny Hucknall, overall winner Mum of the Year competition
A WEST Limerick mother who has campaigned unceasingly to keep her seriously disabled son Adam in the family home has been named as Munster Mum of the Year 2017.
Rebecca Conlon, who lives in Rooska in West Limerick, was named as a winner in the Woman’s Way and Beko Mum of the Year competition at a special ceremony in Dublin at the weekend.
“I was very surprised. There were lots of fabulous mums there, all doing amazing things. I wasn’t really expecting to win,” said the phone company executive and mother of three whose prize involved a €250 Beko voucher and a €500 goody bag.
But she added: “The whole day was lovely. I found it nice to meet all the other mums. It is always nice when you meet other parents and a lot of the mums had special needs children. You don’t feel you are all alone.”
Rebecca’s son Adam, now seven, has a severe form of Mowat-Wilson syndrome, an extremely rare condition that affects fewer than 150 children worldwide. When she was interviewed by the Limerick Leader in 2014, Rebecca explained that this condition means Adam has a heart murmur, suffers from epilepsy and is completely blind in one eye. His immune system is also compromised and he has had a bowel by-pass. The condition has also affected his intellectual development.
But Rebecca, whose first husband Joe died in 2011, was determined to care for Adam at home along with her two other sons, Eamon and Jake.
“Adam feels comfortable being in the house here,” Rebecca said. “He loves this environment. He loves being with his brothers, being with me. Routine is his biggest thing. He needs everything to happen the same way.”
To achieve that, however, she needed a downstairs bathroom close to Adam’s bedroom and a hoist to lift him. But an adaptation grant of €11,000 was a long way from the estimated €30,000 cost. And although, after a lot of cajoling and pushing, the HSE eventually agreed to pay for a hoist at a cost of €10,500, Rebecca and a group of neighbours and friends had to start a fund-raising campaign to close the gap and took part in the Adare to Survive challenge.
The adaptation is now complete, Rebecca said this week. And she is extremely happy that Adam is a pupil at the Nano Nagle school in Listowel which, she says, is fabulous.
But she added: “We lost our respite, which has been gone for 18 months. That was a big loss.” Part of the problem was that because Adam lives in Limerick, respite could only be given in Limerick. “We are hoping we will get it back in October,” said Rebecca, explaining that she had lobbied TDs on the matter and that now, a new respite bed is being provided for Adam.
At the moment also, the family gets just nine hours a week nursing care for Adam plus one night a week which puts a strain on the family and on its finances.
And because Adam has been so sick recently, Rebecca is currently on carer’s leave from her job but hoping, and needing, to get back to it very shortly. The lobbying for more support will continue but Rebecca is enjoying her moment in the sun.