€4,000 raised to buy non-verbal Cork teen speech device

When Cork people open their hearts and share their remarkable stories in the Life section of The Echo, we — and they — are often overwhelmed by the response. SHAMIM MALEKMIAN reveals how three of her recent features had happy endings for those involved
€4,000 raised to buy non-verbal Cork teen speech device
Tommy O'Shea holding his speaking device at his home pic Shamim Malekmian

When Cork people open their hearts and share their remarkable stories in the Life section of The Echo, we — and they — are often overwhelmed by the response. SHAMIM MALEKMIAN reveals how three of her recent features had happy endings for those involved

A SEVERELY autistic teenager is now able to communicate with his mother using a speech generating device, which was made available through a successful crowdfunding campaign publicised by The Echo’s Life section.

Last November, we reported on a GoFundMe campaign on behalf of Tommy O'Shea, who is non-verbal, to raise €4,000 to buy the device.

Ms Garde said she was left in tears by the outpouring of support for her online appeal after the story appeared in The Echo. Clearly, many of our readers donated money to the campaign.

“[The campaign] took off from your article, it went like €2,000 in half an hour. It was mad,” she said. “And then 96FM contacted me to go on PJ Coogan’s show; obviously, they had seen your article.”

The Cork mother had previously tried to secure funding from the HSE to buy the device, which she had on a trial-only basis last year.

Ms Garde said her son covered his eyes in delight after seeing the device that the campaign had bought for him, and being told that he could keep this one permanently.

For the first time in 17 years, Tommy had communicated with his mother when the family received the device for trial use. The teenager was left heartbroken when the trial period ended last November.

I revisited Tommy’s home last week and was greeted with a high-five from the teenager as he proudly showed me his speech generating device.

Last November, Terry had said: “He needs this device, he should be able to get himself across.”

Terry also spoke of her difficulties in accessing respite support.

After our coverage of his story, the HSE’s disability services referred his case to a respite centre, and a team of professionals assessed the 17-year-old for residential care.

Ms Garde told The Echo, however, that the centre had since only sent a letter of acknowledgement in response to her follow-up letters and phone calls since.

“I was over the moon and all excited, but it all went kind of quiet,” she said.

“They said they had sent a contract to disability services and they heard nothing from them in January, and I’ve heard nothing back from them since, except for a letter (of acknowledgement).”

The Cork mother is seeking a respite arrangement in which she would be able to take a break from providing round-the clock-care for Tommy, for a few days.

She expressed concern that the process might take so long that by the time the centre is ready to mind Tommy, he would be considered an adult, and the centre only admits children.

Ms Garde, who has three other children, single-handedly bathes her teenage son, brushes his teeth and regularly resuscitates him if he chokes on his food.

In November, she told The Echo that accessing respite support has become so complex that parents are faced with the unthinkable option of abandoning their mentally challenged children.

She said she’d “begged” the HSE’s disability services to refer her son’s case to a respite centre for years, but they did not respond to her pleas until she went public with her plight.

Ms Garde stated that it is “incredible” that going public with details of your personal life has become the only means of receiving attention from the health services.

The Department of Health is set to roll out a first of its kind ‘autism strategy’ this year. The new policy reportedly urges ease of access to support services for people with autism and their families.

Erika Sexton holding a photo of her daughter Tina and granddaughter Zoey at her home in Ballinacarriga photo Shamim Malekmian
Erika Sexton holding a photo of her daughter Tina and granddaughter Zoey at her home in Ballinacarriga photo Shamim Malekmian

BOOST FOR CANCER FUND

THE mother of a Cork woman battling terminal cancer in the US has expressed gratitude for the outpouring of support for her recent fundraising event in Cork and online crowdfunding campaign, which we reported in Life in January.

We revealed the financial and emotional challenges facing Tina Bills as she copes with stage four metastatic breast cancer. The 30-year-old mother of one, who is living in California, has been given a maximum survival rate of three to five years by her doctors.

Erika Sexton, Tina’s mother living in Cork, told The Echo, that a recent bingo night for her daughter in Dunmanway’s Parkway Hotel had raised more than €2,000, which she plans on saving for the “funeral party”.

The bingo night was organised by Tina’s friends in Cork, Lena O’Connell and Catherine Coakley. Siobhan O’Donovan is the founder of the West Cork fundraiser charity.

Tina Bills, husband Robert and daughter Zoey in America. Tina's mother Erika Sexton lives in Cork
Tina Bills, husband Robert and daughter Zoey in America. Tina's mother Erika Sexton lives in Cork

Ms Sexton said a crowdfunding campaign for her daughter had also raised enough to allow Tina to put her three-year-old child Zoey in a creche during daytimes.

“Now we have enough money to have Zoey in care for five hours in the morning while Tina goes for treatment, which eases Tina’s and my mind a lot,” Ms Sexton said.

She expressed appreciation for people who had supported her daughter’s fundraising bingo and online appeal, as well as The Echo for highlighting the plight of families with terminally ill children.

Ms Sexton said her daughter has recently undergone another operation to deal with cancer that has spread to her bones, adding that there “may be only four effective chemo treatments” left to control her ailment.

Tina, who was born and raised in Ballinacarriga, near Dunmanway, was diagnosed with stage four metastatic breast cancer a year after giving birth to her daughter.

Metastatic breast cancer affects 675 Irish women each year. Around 30% of women initially diagnosed with early stages of breast cancer end up developing the aggressive type.

Erika, an avid gardener whose Pint Tree Lodge Garden in Ballinacarriga is part of the West Cork Garden Trail, says you can’t just ease yourself into the reality of your child’s imminent death.

“It’s just wrong for nature, no daughter should go before her mother,” she says.

The 60-year-old is a member of an American support group for mothers who have a child with terminal disease on Facebook.

Erika has not come across a similar Irish group, and is hoping that Irish mothers with terminally ill children will come together and start one.

If you wish to donate to Tina’s crowdfunding campaign visit https://www.gofundme.com/nwwupg-support-for-tina.

For more information on support for cancer patients and their families in Cork see www.corkcancersupport.ie

Rowan Lawlor and Hazel O'Connor  startred a petition for a skate park to be built in Skibbereen. Picture: Célem Deegan
Rowan Lawlor and Hazel O'Connor  startred a petition for a skate park to be built in Skibbereen. Picture: Célem Deegan

A €60,000 VICTORY FOR SKATE PARK CAMPAIGN

WE highlighted a campaign by two Skibbereen youths to build a skate park in their home town of Skibbereen last November.

And last week, it was revealed that Cork County Council had allocated €60,000 towards the scheme.

We reported on how Rowan Lawlor, an 11-year-old national school student, and his 15-year-old friend Hazel O’Connor started an online petition for a skate park last winter. The petition soon gained support from people across the country, attracting more than 1,000 signatories in a short period, thanks partly to our article.

A delighted Rowan said: “I couldn’t believe it at first when I heard the council is giving all that money for our skate park. I was shocked, but at the same time really happy because this is something that the community needs.”

Two locations, including Skibbereen’s only playground for children, have been suggested for the park.

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