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‘Let’s help Alexis’ fund launched for Killarney girl with rare condition

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TRUST: The 'Let's help Alexis' trust has been set up to raise funds for Stephen and Teresa O'Mahony's four-year-old daughter Alexis to help with her care needs. Photo: Michelle Crean

 

By Michelle Crean

 

A new charitable trust has been set up this week to support a four-year-old Killarney girl who suffers from a rare condition.

A committee of five have launched the 'Let's help Alexis' fund online including a GoFundMe page which has so far raised almost €4,000 of their €50k goal to give Alexis a comfortable life as she grows older.

Currently her parents Steve and Teresa are 24 hour carers for the little girl who has a rare primary metabolic condition called Pyruvate Dehydrogenase Deficiency which has led to a brain abnormality called Ventriculomegaly as well as cerebral palsy, epilepsy, global developmental delay, double hip displacement, cortical visual impairment and sleeping difficulties. Some immediate supports include upgrading their small Seat Leon to a wheelchair accessible vehicle as she has outgrown her car seat making it difficult and uncomfortable for her on long journeys to Dublin for necessary appointments.

The committee is made up of five people who are not related to Alexis' parents and will make all the financial decisions independently of both Steve and Teresa to prioritise Alexis' needs.

"A few people suggested to us a few years ago to set it up," Steve told the Killarney Advertiser this week.
"The committee are planning a number of fundraisers and have set up the fundraising page. I'm delighted that it's independent of us. It's about what is in the best interest of Alexis and the committee will decide. We're very grateful to them for giving up their time."

  He explained that Alexis is now almost 15kgs and has outgrown her car seat and that as their car is compact it's a struggle to fit everything they need for the long trips to appointments in Dublin.

"She is getting big now and her car seat is too small. She has been sanctioned for a wheelchair but it won't be suitable for our car. She needs a van with a ramp for the wheelchair. Before you could stop and lift her out but it's harder now. Even stopping on the long trips she's now too heavy for the nappy changer when we take a break in places like Obama's and then there's health and safety - especially now. With a van we'd have the space for everything. She's on a special Ketogenic diet and food for 24 hours has to be made up the night before and brought with us. And then there's the medicine bags and change of clothes."

Funds raised would also go towards extra physio for her, he added.

"She's getting private and public physio but it would mean we can pay for more private sessions. We're also looking into therapeutic horse riding."

And with the physio, which is done at home, comes an increase in the cost of heating oil which is double what most people spend, he added.

"The trust will mean that Alexis will have everything she needs as she grows older. We just want to give her the best chance possible, not just for now but for the years ahead."   

He added that messages of support from all over have been pouring in since the committee launched the trust.

"You see the good in people. It lifts your spirits and it just shows that everybody in society is equal."

To make a donation to help the family go to GoFundMe: Let's Help Alexis and you can also search the same name on Facebook to find out more.

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Jordan’s new role with St Paul’s

By Sean Moriarty Killarney’s Paralympic hero Jordan Lee is to take on a new role with Scott’s Lakers St Paul’s Killarney Basketball Club. Jordan began his sporting career with the local basketball club where he created history by becoming the first amputee athlete to represent their country at international level. The High Jumper then switched […]

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By Sean Moriarty

Killarney’s Paralympic hero Jordan Lee is to take on a new role with Scott’s Lakers St Paul’s Killarney Basketball Club.

Jordan began his sporting career with the local basketball club where he created history by becoming the first amputee athlete to represent their country at international level.

The High Jumper then switched to track and field and qualified for the Tokyo Paralympics where he made history by becoming the first Kerry athlete to act as a flag bearer for an opening ceremony and lead an Irish team into an Olympic Stadium.

Now back home and preparing for the next Olympics in Paris, he has returned to his first love and will join the backroom staff at the local Division One basketball club ahead of their National League campaign which begins next month.

His father Jarlath Lee is head coach with St Paul’s.

“Jordan is joining us as our strength and conditioning coach,” Jarlath told the Killarney Advertiser.

INTERNATIONALS

Meanwhile, Scott’s Lakers St Paul’s Killarney Basketball Club National League team will have a distinctive feel to it this year after securing the services of three overseas players it for the season ahead.

The club’s biggest signing is Canadian professional Ben Miller. It was originally hoped that the former two-time Manitoba Player of the Year would play for the local side last season but the pandemic got in the way and the National League was never played. However, he did play two training games this time last year before returning to Canada until travel restrictions lifted.

“He is a good guy, very approachable and very good with the young members,” Jarlath said.

The club has also signed Bulgarian International Emilian Grudov.

The 20-year-old has already represented his home country at U16, 18 and 20 level.

“He is young, athletic and very good offensively,” added Lee.

The returning Lithuanian Dianius Varanaukus completes the club international line up for the 2020/21 season.

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Soccer coach licensed to one of the highest levels in Ireland

By Sean Moriarty A Killarney soccer coach has been praised by the FAI for her contribution to soccer in the county and on the occasion of her being granted a UEFA B Licence this week. Ramona Keogh of Mastergeeha FC has qualified for one of highest-ranking coach licences in Europe.The UEFA B Licence is a […]

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By Sean Moriarty

A Killarney soccer coach has been praised by the FAI for her contribution to soccer in the county and on the occasion of her being granted a UEFA B Licence this week.

Ramona Keogh of Mastergeeha FC has qualified for one of highest-ranking coach licences in Europe.
The UEFA B Licence is a coaching licence mandated by UEFA, the official governing body of European football. The licence is one level below the UEFA A Licence and allows holders to be head coaches of amateur clubs, youths up to age 16, and assistant coaches for professional clubs.

Ramona started her training in November 2019 and continued, when restrictions allowed, on several block weekends taking place in FAI Headquarters Dublin, Foto Island in Cork, and final assessments in NUIG in Galway.

“Ramona played a significant role in the course group, supporting the younger coaches and challenging those more experienced, ensuring that the group was dynamic, engaging, interactive and a real positive learning environment,” said the FAI’s Head of Coach Education FAI Niall O’Regan.

“Ramona has been a significant role model for not only female coaches but also males coaches in the Kerry region and has done phenomenal work in her previous club Killarney Celtic and more recently with Mastergeeha. It is so important to have such role models and the motivation Ramona has shown is infectious and many coaches will continue in the same vein.”

For Ramona, this week’s award was the culmination of months of hard work, seminars and study.

“It was really tough at the time, final assessments had been submitted, everything had then switched to Zoom and we were so eager to get it finished. Luckily enough I got to finish off a lot of the course content online and then had individual assessments with my tutor Richie Holland current Cork City Men’s Assistant Manager,” she told the Killarney Advertiser. “Then when we returned to outdoor sports in July we got our practical assessments finished with Galway Utd in NUIG.”

ASSESSMENT

The final assessment took place at Mastergeeha FC pitch – the first time ever that a UEFA coaching assessment took place in Kerry.

“I was coaching in Mastergeeha FC in Killarney pre covid and based on logistics and other coaches’ locations in Munster on my UEFA B I was delighted to coordinate a UEFA B assessment with the FAI to be held in the Mastergeeha with the help of the committee,” she added.

“Tom O’Connor FAI Coach Educator and former Interim Republic of Ireland’s Head Coach was really impressed with the setup, the standard of really good footballers and the fantastic committee that ran it so smoothly.”

It was the first time UEFA B assessments were ever held in Kerry and the facilities, committee and the Mastergeeha U16 Boys team were outstanding that day.

She received mentoring and support from some of the biggest names in Irish soccer.

“I was delighted and honoured to receive my UEFA B Diploma Licence,” she said. “Throughout the diploma I’ve had some great tutors, mentors and some great guest speakers from Robbie Keane, Vera Pauw, Stephen Rice and Ruud Dokter FAI High Performance.

“There was a great core group of us on the course from Irish Senior International Players like Katie McCabe, Megan Campbell, Louise Quinn, Niamh Fahy and I’ve made some amazing friendships with all the ladies on the course. From the start it was a group of huge experience, drive and determination was something we all had in common and it’s great to see us all complete it together.”

LOCAL HELP

She could not have done it without the help of her home club.

“On a personal note, I just want to thank Mastergeeha FC for all their help and support, with special mention to all the management committee, teams and coaches. Must give a mention to Allan Moynihan, Brendan Buckley, Paul Lenihan and Ulick O’Sullivan also. I’m really looking forward to getting back to Academy training in the next two weeks,” she added.

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