Each night, Harry Bulman’s power wheelchair is plugged in at his family home in east Cork. Also plugged in are his cough assistance machine and his bed.
All three items are integral parts of nine-year-old Harry’s life, helping him to be as independent as possible as he lives with Spinal Muscular Atrophy.
The sports-mad Youghal boy was diagnosed with SMA when he was 18 months old in 2015. For the past three years he has been on Spinraza, a drug deemed a miracle product for children with SMA. He was among the first 25 children to get access to the treatment through the HSE.
SMA reduces a person’s physical strength by affecting the motor nerve cells in the spinal cord. This can affect a person’s ability to walk, eat or breathe. Harry also suffers from scoliosis as part of his condition.
Families like those of Harry Bulman have been hit hard by the increase in the cost of living. And mum Rebecca says that electricity is one of the biggest costs for the family.
She says that typically, the family’s electricity bill used to be in the region of €180 for two months, but “we got one for €400 in recent weeks.”
Limiting the use of electricity is not something which can be done for Harry’s family, given his dependence on it. As a result, she is grateful for the €600 electricity credits announced in Budget 2023.
Rebecca explains: “We have to charge his chair every night for 12 hours to get him through the day on it. I know it costs less at night time but it is still a lot. He needs the wheelchair all the time – it is the only way he can move around.”
She adds: “His bed is plugged in as well because he can sit up whenever he wants then. And there is a cough assistance machine that he has to use to get ready for therapies and he has to use it every night for around 20 minutes. It builds up his lungs. And if he is sick, he has to use it more.”
And Rebecca also outlined their travel costs, saying: “I have to take Harry to Dublin numerous times which costs about €90 to get up and down now. For hospital appointments, we have to go once or twice a month.
"Then, he has training for matches up there as well. He does power chair football so there is a two-hour trip every Saturday for training and then if he has a match, he is either in Belfast, Meath or Dublin. Diesel is a massive thing for us.”
There are also costs involved with younger children, seven-year-old Josh and two-year-old George. Rebecca is grateful, however, for family help as she does not have childcare costs to consider.
She is currently on domiciliary care allowance and carer’s allowance, while her partner Richard is on a disability payment. The increase in the domiciliary care allowance by €20 and of social welfare payments by €12 are good news for the family, she says.
Rebecca said the double payment in child benefit in November will be a great help in meeting costs for Christmas, while the free schoolbook scheme announced for primary schools will benefit both Harry and Josh next year.