West Kerry helping Hannah find a voice
DIAGNOSED WITH RETT SYNDROME, AN ANNASCAUL TODDLER WILL ONLY BE ABLE TO COMMUNICATE USING A HIGH-TECH SCREEN. TADHG EVANS REPORTS...
A LITTLE girl with a heart-breaking condition that means she will never be able to talk is the focus of a fundraising campaign to get her the cutting-edge technology she needs to be able to simply communicate with her family.
Two-year-old Hannah Falvey, from Annascaul, was diagnosed with Rett Syndrome last year; a neurodevelopmental disorder that impairs her motor function and precludes her from ever being able to speak.
Parents Brendan and Nancy are leaving no stone unturned to realise their dream of being able to talk with Hannah by means other than speech, however.
But to be able to communicate with mom, dad and sister Lily, Hannah will require the use of a special computerised system.
She’s now trialling a ‘Tobii’ screen, using a programme that monitors her eye movement to identify her choice of the picture options presented. It’s showing the potential as a Godsend for the Falvey family already, but to buy one for Hannah’s long-term use will cost in the region of €15,000.
That’s where the people of west Kerry are coming in, rallying to the little angel’s cause in a campaign that begins with a 70km trek of Sliabh Mish, from Castlemaine to Brandon Point, on Friday, August 12 next. “We’ve set up a gofundme page (A Voice for Hannah), and since we shared it on Facebook the response has been amazing,” mom Nancy said.
HANNAH Falvey is as bright as you’d expect any girl of her age to be. Dressed in a pink Mini Mouse top, Hannah chuckles regularly, and lights up at mentions of her favourite show, Peppa Pig. But because of a rare syndrome she was diagnosed with last year, the little Annascaul girl needs special attention:
“Hannah was born in 2013, and was diagnosed with Rett syndrome in May of last year”, her mom, Nancy, explains.
“It affects girls almost exclusively, and there’s only 70 girls in Ireland with the same syndrome.”
Her Dad, Brendan, holds Hannah in his arms and explains the effects of the condition:
“She’ll never talk, and as of yet she hasn’t walked – roughly half of girls with Rett syndrome never will, and those who can need assistance.”
“She has limited control over her movements, but some can be improved with a bit of practice. We’ve got her spoon feeding herself right now, and even though she has trouble with it, she’s doing brilliant!”
Nancy explains that helping Hannah with her balance, and building towards walking, is very important:
“We keep her standing when she’s watching some of her shows, so she can strengthen those functions, and we’ve seen an improvement in her balance. We also have regular visits from a HSE physio that helps us with what we’re trying, and they’ve been so helpful in giving us special equipment that’ll help the process.”
But even though Hannah will never speak, with the help of technology, communication is possible.
Nancy opens a YouTube tab on her laptop to explain:
“There’s a couple of kids in Kerry with different conditions from Hannah’s using a Tobii screen at the moment.”
“We first came across the screen after Hannah was diagnosed.”
Nancy points at the screen to a video of a girl using the Tobii to communicate with her Mom:
“Girls like Hannah have more control over their eye movements than any other function, and that’s how Tobii works.”
“You can see in this video how the girl is using the screen – when her Mom asks her questions, her eyes focus on the option that she wants to use as an answer. The Tobii detects, and flashes her answer up on screen.”
In May, Hannah was to trial the Tobii, and Brendan and Nancy were encouraged by her progress:
“She’s only two, so her use was a little limited, as you’d expect”, Brendan says. “But the trial was about getting her used to the games and helping her understand that she can do things on screen with her eye movements – and she was definitely learning.”
Nancy has picture cards in front of her, and she notices my curiosity:
“If we want her to choose between two options, we put two pictures in front of her, and she eventually focuses on one of them. You see, I’ll ask her to choose between watching a cartoon, or having food.”
Nancy picks up two cards, one of a bowl of food, the other of Hannah’s beloved Peppa Pig.
At first Hannah doesn’t react, but Brendan explains that “it takes her a few seconds before the question registers”.
And just as he says it, her eyes begin darting from one picture to the other.
Suddenly, Hannah’s eyes rest on Peppa. She smiles, before chuckling heartily. Her heart’s desire is obvious.
Brendan laughs, and puts Hannah in her special high chair, before wheeling her over in front of the television. “She loves Peppa!” he tells me.
It’s clear that Hannah is indeed able to get messages across with her eye movements, and that’s why Nancy’s so confident in the Tobii:
“We don’t need a good broadband connection, because she’ll be starting off with basic functions. As she builds her way up, things get more sophisticated, and it we’ll need good internet, but that’s not for a while”.
“It’s expensive”, Brendan starts, “but it’s worth it. We could have gotten a laptop system, but it’s much more beneficial if we have touch screen, so we can communicate more easily with Hannah. That’s the advantage with Tobii.”
“We’ll have to try and get it quickly, because like anything, the younger someone gets to grips with something, the better. If we leave it too late, she mightn’t get the best from it.”
Hannah’s parents and her sister Lily, almost six, dream of regularly communicating with their home’s youngest member, but they’ll need help:
“The screen costs around €15,000. We’ve set up a gofundme page, and since we shared it on Facebook the response has been amazing”, Nancy tells me.
“But the sponsored walk that two friends are doing in Hannah’s name is the main fundraising event.” Brendan says.
“It’s incredible what they’re both doing for us. They’re going the length of the Slieve Mish range from Castlemaine to Brandon, around 70 kilometres. It’ll take around 20 hours, and they’ll need to stop for a few hours to get a bite to eat and a bit of a rest.”
“Sponsorship cards will be in pubs, shops, and other places around west Kerry, so if people want to get behind this, they can!”
Nancy and Brendan go to great lengths trying to recall everyone that they need to thank:
“Our family, friends and neighbours, in west Kerry have been extraordinary in supporting Hannah. We have to thank all the therapists, medical people and groups that have helped with Hannah’s development, and in caring for Hannah. They relieve as much pressure as they can, and they’ve given us some amazing equipment too.”
Sponsorship cards are available around pubs, shops, and elsewhere in west Kerry.
Alternatively, you can donate online at the ‘A Voice for Hannah’ gofundmepage page.