After going through a normal pregnancy last year, Imelda Sankson’s second child, a beautiful baby boy, Theo, was born without complications on May 8, 2014. When Theo failed the routine health screening at two-days-old, Imelda and her husband were told this was normal. But when he failed it again the following week, the couple knew something serious was wrong with their baby boy. After numerous tests, Imelda and Stephen were given the devastating news that Theo has an extremely rare form of deafness due to his auditory nerves fusing to some bones in his head, which means that sound can’t pass through the nerve so hearing aids or a cochlear implant — a surgically implanted electronic device providing a sense of sound — won’t work.
Imelda explains to Mary O’Brien how Theo’s only hope for sound is a bionic ear (Auditory Brainstem Implant). If he doesn’t get the implant, he will live his life in complete silence.
With only a handful of surgeons in the world able to perform this surgery, Theo will have to fly to Italy for the procedure. Factoring in follow-up treatment and other expenses, Theo’s hope for sound will come at a large price — approx. £90k. And after the surgery, Theo will continue to need intensive speech therapy until at least the age of five or six at a cost of c. £10k per annum.
But friends, family and kindhearted strangers in the UK and Ireland have rallied and funds are being raised for Theo on a daily basis — almost £15,000 in total to-date. The Coffee Morning held in Clonakilty by Imelda’s mum Josephine O’Leary raised €2,200 alone.
A native of Clonakilty and now living in the UK, Imelda (née O’Leary) is humbled and grateful for the support people have shown in both countries. “Thank you to everyone who has done something for us since we started this, whether it be organising an event, donating time or money or saying a prayer for us. Thank you all, we really appreciate it.”
Theo’s condition has meant a significant adjustment for the family. Aside from the worry and stress associated with the upcoming operation, they are all taking sign classes, including Theo’s big brother Harry, age three, who has just completed his first term of baby sign. “I never thought about how much sound a baby takes in before this,” says Imelda, “how much they overhear, which makes it easier for them to learn. A deaf baby only knows what’s in front of them. The other thing people don’t realise is that you need your hearing to balance, so Theo has been delayed in sitting up and gaining upper body strength. He relies on his sight completely to balance, so if he’s sitting up and closes his eyes, he falls over.”
Like every mum, Imelda’s hopes for her child are that he’s happy, healthy and independent. At a minimum, a successful outcome to the surgery will mean that Theo will hear everyday environmental noises, which will assist him greatly with lip reading and speaking. “My utmost hope is that with lots of therapy and hard work Theo will develop speech and attend a normal school where he can mix with other children his own age,” says Imelda.
Less than one per cent of people in the UK can sign, so without sound or speech, Theo will have little chance of integrating in mainstream society.
Theo’s godparents, Alice O’Leary and Terry Brady are running the Waterford marathon in June to raise funds for Theo. Terry will attempt to break the current Guinness World Record running dressed as a bottle. The current record is 3:31:57. Alice will run the Waterford half marathon (13.1 miles) in a superhero costume.
Donations can be made at www.ifundraise.ie.