For most mums, raising a six-year-old can be hard work. For 25-year-old mum Hannah Conroy, that job is even harder. She wouldn’t have it any other way though…
Hannah’s son Ben has oculocutaneous albinism, nystagmus and photophobia and has very little vision. Not only did Hannah manage to survive on very little sleep, but she also managed to attend university, get a degree, followed by a Masters degree, work part-time and still find the time to take Ben to his numerous medical appointments.
Hannah, from Killyman in Dungannon, found out she was pregnant just after completing her A Levels at the age of 18.
Hannah recalls: “Ben was born prematurely at 31 weeks and spent many weeks in neo-natal care. On the day he was born I queried his extraordinarily white hair with the doctor who very quickly dismissed my query. However, on the day of his discharge we were asked to return the following week they were querying albinism.”
Soon after Ben received his diagnosis and Hannah processed the news that her little boy would be blind. She said: “As this was a new condition to not only me, but my family, it was very scary because of the unknown. Initially we were told Ben had no vision and had hearing loss.
“Immediately my fears for his future became overwhelming. I worried about what the future held for him; could he lead an independent life? Would he have friends? What school would he attend? Would he be able to drive? What would having children mean for him? What kind of a job would be suitable? And so the uphill battle began!”
With a supportive family and continuous support from RNIB (the Royal National Institute for Blind People), Hannah and Ben are thriving and Ben is a happy, little boy who refuses to let his sight loss hold him back from anything. “Ben copes well as he is very determined and faces every challenge courageously,” said Hannah. “He loves to be around adults as he fears the unpredictability of children and has a very keen interest in music and has started some classes – his heightened sense of hearing is a great advantage to him. He enjoys outdoors and sees himself as a bit of a farmer having numerous tractors and animals. He enjoys swimming and since mastering the act of cycling, he spends hours cycling inside and outside.
“Ben loves his glasses and we have noticed he really appreciates the benefit they are to him more now than ever. They’re the first thing he puts on in the morning and he doesn’t like having to take them off to even take off his jumper! He loves trendy glasses and our trips to the opticians can last a very long time as he decides which pair to select. Ben’s prescription results in his glasses being quite thick though, and sometimes this leads to them becoming uncomfortable.”
Life wasn’t always so easy though and Hannah admits that things were hard, particularly in the early days.
She said: “While studying I worked part-time also. As you can imagine this was very difficult as I travelled every day to Coleraine. Due to Ben’s condition he wasn’t a good sleeper, so days were very tough. His sleepless nights gave me many hours to ponder the future. My main goal, however, was to give Ben the best life that I could and I knew that completing my education was the way to do this.
“Paramount to me was getting the best help for Ben and so I worked hard to make him as independent as I could, as involved in everything in life as I could as I knew this would benefit him in the long run. We attended every appointment giving to us and I carried over every instruction religiously.
Two years ago, Hannah added ‘fundraiser’ to her list of roles and raised an incredible £1,400 for RNIB. She recalls: “In April 2016, Daddy turned 60 and he asked me would I like to use this opportunity to raise money for RNIB, I jumped at the chance.
“RNIB as a whole has been extremely helpful in all walks of Ben’s life and I felt I needed to do something for them as a token of my appreciation but also to enable them to continue to help other families who find themselves in similar situations.
“In particular, I feel we couldn’t have been any luckier in the person selected to deal with us. Roisin has been a constant rock, constant support, wealth of knowledge and her enthusiasm is infectious. Nothing is ever any problem to her and she is always just a phone call away. So Ben and I would like to wish Roisin (the caring and supportive mother of so many children with sight loss) a very Happy Mother’s Day!”
Hannah now works full-time within the food industry and Ben is doing great. He is currently in primary two in a mainstream school, but Hannah admits his sight loss does hold him back. “Reading is particularly difficult for him and as he doesn’t like to show any weaknesses, he resists reading to hide this. Due to the nature of Ben’s condition it was, and still is to an extent, a waiting game. He is just like any other wee six-year-old boy with very normal hopes and dreams.
“I don’t see myself as a hero mum, I’m only doing the same as any mother does for her child however due to his needs I have to go above and beyond.” To find out more about RNIB, phone: 028 9033 4118, or email: firstname.lastname@example.org
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