The Phelan family from Raheen Park, Youghal, have launched a campaign to raise funds to sent their 11 year old son, Keith, who suffers from Cerebral Palsy, for therapy in Germany, in the hope that it will improve their son’s quality of life. Keith is quadriplegic (all four limbs are affected), suffers epilepsy and has Cerebal Palsy (permanent disorders of the development of movement and posture, causing activity limitation).

If you would like to help or donate to the fund:

Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.

 

The family of Youghal schoolboy Keith Phelan are determined to continue the fight improve his quality of life despite the closure of the centre providing his stem cell treatment in Germany.  The XCell Centre in Dusseldorf, had administered one treatment session for Keith’s cerebral palsy of treatment last month and the family hoped to return there for further treatment next year.

However the centre has been closed, temporarily at least, apparently in response to the German government implementing new EU guidelines on the provision of stem cell treatment.  “We have been told that the centre must apply for a new licence and naturally we are very disappointed,” says Keith’s dad Tony, “and as yet we don’t have any timescale on that.”

The centre’s website carries a brief notice indicating that “stem cell therapy “is currently not possible to perform” and regretting the need to cancel appointments “until further notice.” Updates on the situation are offered on completion of an online form.

While the closure marks a setback in Keith’s treatment it is not the end of the road in their quest to provide a better quality of life for Keith. As part of his on-going treatment, the XCell Centre had strongly advised that Keith travel to the German city of Unna, for a week of neuro-rehabilitation, involving physical and speech therapy. The family hope to meet this arrangement, for which efforts are continuing to raise the €5,000 cost.

The second youngest of four siblings, Keith suffered bleeding in the brain at birth, which has effectively rendered him almost paraplegic and prone to drooling and epilepsy. He attends the local Bun Scoil Mhuire and undergoes daily therapy, including a weekly 100 mile round trip to the Bandon Hyperbaric Oxygen centre.

Stem cell treatment involves removing bone marrow, harvesting stem cells and re-administering them, by injection or intravenously, into the body. The process is unscientifically unproven but practitioners believe the stem cells may replace or regenerate diseased tissue. While debate rage as to the treatment’s viability, it is claimed to help relieve a wide array of degenerative conditions, including cerebral palsy, stroke, MS, diabetes, spinal injuries, Parkinson’s, arthritis, Alzheimer’s and autism.

For the Phelan family, the XCell centre brought hope without promise. “We were told from the outset that there was no guarantee it would help Keith’s,” says Tony. “We certainly don’t expect a miracle cure but we will explore every opportunity to provide Keith with a better quality of life.”

Six months of fundraising initiatives saw the local community fund the €9,000 treatments session for Keith, who travelled to Dusseldorf with his dad and mum Margaret. Tony says the family were treated “very kindly and very professionally” at the centre.

The family was advised that Keith’s brain was formatted towards instructing certain responses and that “it needed re-formatting towards developing new habits,” says Tony.

The centre provided physiotherapy sessions and supplied a detailed programme of exercises to bolster this process. Depending on his progress, the centre would decide whether to recommend further stem cell treatment for Keith. .

Tony says Keith’s general condition and demeanour has improved since his return from Dusseldorf. “His posture is better, he is using his left hand for the first time and his reading has improved,” he says. “I can’t say categorically whether this is due to the stem cells, the physiotherapy or a combination of both,” he adds. “If the centre doesn’t re-open we will consider other options to give Keith the best future we can provide.” The X Cell Centre did not respond to inquiries for further information.

COMMUNITY RADIO YOUGHAL’S RADIOTHON in association with Youghal Cancer Support Group was a great success. The Radiothon, which began at 10am on Friday with Jane/Holly, concluded at the end of Nooch Kenefick’s Sunday Morning Show. In between, dozens of volunteers gave of their time to take part in a 50 hour non-stop broadcasting event.

The proceeds from the Radiothon will be split evenly between Youghal Cancer Support Group and Community Radio Youghal. Youghal Cancer Support Group is trying to find a permanent home for a cancer support centre in Youghal that would serve the town and the surrounding areas of East Cork and West Waterford. CRY 104fm is fundraising for its relocation fund.

Speaking at the end of a long 50 hours for him, CRY Community Development Officer, Darragh Parker thanked all of the people who contributed to the Radiothon; those who collected; presented; made tea, answered the phones or who helped in any way. Darragh also paid tribute to CRY’s listeners for their generosity in supporting the fundraising event and to the many sponsors who helped to make it a reality. The total collected should be known in the next couple of days and cheques will be presented in the coming weeks.

 

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50 HOURS ON THE AIR IN YOUGHAL FOR CHARITY – Report Denise FitzGerald

On Friday, May 27th at 10am Community Radio Youghal will embark on a Marathon of sorts as they attempt to broadcast 50 hours of continuous live radio. The Radiothon kicks off on Friday morning from 138 North Main Street Youghal and the CRY team will be broadcasting from the vacant premises and CRY studios for the duration of the 50 hours.

The feat is a joint fundraiser in aid of  The Youghal Cancer Support Group and CRY104fm and all proceeds will be split evenly between the two organisations.

THE YOUGHAL CANCER SUPPORT GROUP- is dedicated to opening a drop in centre in Youghal, to offer help and support to all those who are dealing with, or have suffered the trauma of cancer. The Centre will also offer help and support to their friends and family. The group wants to offer this service to everyone in East Cork and West Waterford, providing a range of therapies  and advice. It will cover Clashmore, Ardmore, Dungarvan,Tallow, Cappoquin, Lismore, Youghal, Killeagh, Castlemartyr, Midleton,and all townlands in between. In fact it will be open to people from all over that want to avail of the Centre.

Community Radio Youghal (CRY 104fm) meanwhile are planning to relocate from their existing premises in Cumann na Daoine to Nagle House, South Abbey in order to better serve the community. The new premises will provide better training facilities for Volunteers and Community groups. These facilities will allow greater access to Studio equipment and technical training for volunteers and for those who wish to gain experience in broadcasting and the media.

C.R.Y 104fm Station Manger, Declan Gibbons is looking forward to the station hosting the Radiothon. ‘We hosted an all-night Radiothon last December, to help raise much-needed funds for local boy, Keith Phelan and that was very well supported by station volunteers and by the local community.

This event really will be a marathon though – 50 hours of live radio, all provided by volunteers!

‘We’re delighted to partner with the Youghal Cancer Support Group. They are seeking to provide a vital service in Youghal for people from all over our listenership area, so it makes perfect sense to support them. Volunteers from both organisations will be involved throughout the 50 hours and we hope that people will respond generously and get into the spirit of the Radiothon”, he said.

CRY continues to work closely with the students in Pobail Scoil Na Trionoide and it is fitting that Pobail Scoil students will launch this epic Radio Marathon on the Friday morning.

There will be on street collections during Friday and Saturday and Collection boxes will also be placed in shops throughout Youghal town beforehand so if you want to play a request for yourself or your friends and family throw a Euro in the box and fill out the request form and all proceeds will go to these two worthy causes.

And don’t forget all your favourite CRY presenters will be keeping you entertained throughout Friday and Saturday night, May 27th and 28th.

Click on image to enlarge

THE FUTURE looks a little brighter at the very least for young Keith Phelan and his family following the Youghal boy’s trip to Germany for inaugural stem cell treatment for cerebral palsy. The 10 year-old pupil of Bunscoil Mhuire travelled to Dusseldorf with his parents Tony and Mag, where he underwent the revolutionary procedure in a bid to generate improvement in his condition and to enhance his quality of life long-term. The outcome proved positive, with the benefits in their early stages promising further and considerable progress.

The trip, undertaken amidst faith and hope, was accommodated by considerable charity from Keith’s home community. For over a year, numerous individuals and organisations gave their moral, physical and financial support to meet the €9,000 cost of the medical treatment alone.

Stem cells therapy

Stem cell treatment involves the removal of isolated, autologous (adult) stem cells from the body. The cells are taken from bone marrow, usually through a long thin needle inserted into the hip. Children undertake the extraction under a local anaesthetic. The cells quickly multiply million-fold before being re-administered to the body. The re-insertion can occur via injection or by intravenous drip, as was administered in Keith’s case.

It remains a mystery as to how or why the treatment works but it is assumed that stem cells discharge certain substances which activate the diseased tissue. The cells may also replace damaged tissue. Though scientifically unproven, it is being adapted to treat a varied range of degenerative conditions, including stroke, MS, diabetes, spinal injuries, Parkinson’s, arthritis, neuropathy, Alzheimer’s, heart damage, eye disease, autism and incontinence, with varied success. It is estimated that XCell’s success rate sees roughly one third of patients experiencing no positive results, one third seeing moderate improvement and one third experiencing excellent results.

Testing time

Keith arrived at the Dusseldorf XCell centre unaware of the purpose of his trip. “He became a little agitated when he saw the medical equipment,” recalls Tony. His parents were unsure as to whether Keith would prove suitable for treatment at all and if he was, there was concern that he would react badly to a local anaesthetic, as he is prone to do.

All worries proved baseless. The medical team, under Professor Dr. Nils Haberland, administered a very small dose of local anaesthetic, with no side effects. This facilitated the 40-minute procedure during which Keith’s stem cells were extracted. The family then waited anxiously for two day to learn whether the cells multiplied sufficiently and also whether they were of adequate ‘vitality’, the term that defines stem cell quality. If these criteria were not met, that would mark the end of the mission. To everyone’s immense relief, the procedure produced an excellent 18 million cells of high vitality. The treatment was allowed to proceed.

Retrain the brain

Meanwhile Keith had commenced physiotherapy at the centre, under a female specialist described by Tony as “excellent.” It was defined that Keith’s brain, having suffered bleeding at birth, was formatted towards instructing certain responses and behaviour. This produced many behavioural symptoms, including drooling and a negligence or inability to perform many physical actions, manifest in restricted limb movements to the point of paraplegic, slouched posture and epilepsy. “Basically, she said his brain must be re-formatted and helped to develop new habits, so to speak, over very long period of time,” says Tony.

Demanding and receiving Keith’s full attention, Dr. Haberland initiated a physiotherapy process called the Face Former. “It’s a device something like a gum shield,” explains Tony “and he undergoes exercises four times daily to help curb persistent drooling, which is caused by his tongue being relatively stagnant.”

The re-admission of Keith’s stem cells was relatively painless. It involved administering mannitol, a serum which allows ‘opens a portal’ for an hour or so, to allow the stem cells to travel to the brain. In Keith’s case this was done through an intravenous drip, rather than a spinal injection. After six days in Germany, he returned home.

Improvement

Since his return, Keith’s general demeanour has been noticeably better and signs of improved abilities are discernible. “He is much more inclined to sit up straight, he tries to use his left arm for the first time and his reading is also much better,” Tony reports. “Some of that may be down to the therapy he receives here at home or it may be largely due to the stem cells, or perhaps a combination of both. Beyond the physical, it is hoped that Keith’s mental approach to his condition will also benefit from the new process. “Dr. Haberland advised us that while we may do all we possibly can for Keith, he must also be encouraged to all he can for himself,” Tony reflects.

Onward fight

The future is brighter and holds much promise, hope but it also remains unclear and indefinable. “Firstly, it’s important to understand that there is no magic cure. Keith won’t suddenly transform into a regular person,” Tony explains. “He will always require a degree of care. But what we are trying to achieve is to improve his independence and quality of life as much as possible.

For now Keith will adhere to his regular physiotherapy schedules, combining the programme provided from Dusseldorf with that of his Irish care. Throughout the next year, the family will liaise with the XCell Centre, after which the centre will judge whether Keith would benefit from receiving further stem cells.

However in the meantime and by way of maximising his progress, the centre is very keen for Keith to visit a different centre in the German city of Unna, ideally within months. There he would undergo a week long course of advanced neuro-rehabilitation, a sort of gymnastics-physical-speech therapy. It costs €5,000 and, along with the necessary absence from work, Tony isn’t sure how practical or possible it is to comply. “We will continue to fundraise as best we can,” commits Tony and see where we go from there. Whatever happens, Keith is and always will be, loved dearly by us all.”

As they address each day in turn, the Phelan’s are eager to thank all who have brought Keith this far. “From the very bottom of our hearts, my family and I thank the people of Youghal and beyond who have supported us. It is so very heartening to know that people can be so kind and giving. It gives us strength to move forward.”

Tony wants it known that should anyone else in a similar situation require advice or guidance, the Phelan family will gladly provide what help they can. Indeed hope can spring from the most unexpected wells. During their time in Dusseldorf, the family met a family from Mayo also seeking stem cell intervention. They had no idea the centre existed until an internet search led them to youghalonline.com.

Donations to the Keith Phelan Fund can be made at:

AIB bank Sort Code 93-43-05; A/c No: 95841087.

A “Healing Hands” fundraiser for the Keith Phelan Appeal, which including Reiki, Stress reduction and relaxation, “Laying on Hands”, Spiritual Practice, Card Reading, etc. was held in the Walter Raleigh Hotel recently. The funds will help aid local boy Keith Phelan from Raheen Park, who suffers from Cerebral Palsy, to travel to Germany for an operation, in the hope that it will improve his quality of life.
Photos: Nathan Twomey www.youghalonline.com

The Phelans are attempting to raise enough money to bring Keith to the XCell-Center Dusseldorf, Germany where they believe he could benefit from stem cell treatment. Following inquiries to the centre they were informed that Keith had a number of options: surgical or lumber puncture (where cells are withdrawn from the hip bone marrow, good cells are retained in the lab where they regenerate and are reinserted by lumber puncture). It takes five days to complete the procedure.

An account for the fund has been set up through the Allied Irish Bank and the family is already busy planning ways to make the campaign successful.

To donate to the fund: Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.

Click on image to enlarge

The Youghal Cycling Club were delighted to present the fundraising cheque to the Keith Phelan Appeal recently. The charity fundraiser cycle from Youghal to Castlemartyr was held last October. The funds will aid local boy Keith Phelan from Raheen Park, who suffers from Cerebral Palsy, to travel to Germany for an operation, in the hope that it will improve his quality of life. Photo: www.youghalonline.com Email: news@youghalonline.com

The Phelans are attempting to raise enough money to bring Keith to the XCell-Center Dusseldorf, Germany where they believe he could benefit from stem cell treatment. Following inquiries to the centre they were informed that Keith had a number of options: surgical or lumber puncture (where cells are withdrawn from the hip bone marrow, good cells are retained in the lab where they regenerate and are reinserted by lumber puncture). It takes five days to complete the procedure.

An account for the fund has been set up through the Allied Irish Bank and the family is already busy planning ways to make the campaign successful.

To donate to the fund: Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.

A great night had by all who “walked the line” to the Mall Arts Centre. John Schmid was in top class form as he sang his way into the hearts of all those in the audience! Practically everyone joined in the chorus of “Ring of Fire” and in between songs, John gave insights into Johnny Cash’s life and background to his songs.

John’s latest album was recorded at the Cash Cabin and John told us that there is a vault that contains enough material to keep a recording studio busy for the next 10 years! However, the evening belonged to Keith Phelan (the main beneficiary of the concert) and John got to meet Keith (and his parents) before the concert started! Conversations, craic and laughter flowed on in the foyer of the MAC after the event and signs are if John returns to Youghal in 2012, people will be delighted to come and hear him again! Till the next time, we “walk the line”.

A charity cycle organised by the Youghal Cycling Club, from Youghal to Castlemartyr and back was held on Sunday October the 17th in aid of local boy Keith Phelan from Raheen Park,whose family have launched a campaign to raise funds to send their 11 year old son, Keith, who suffers from Cerebral Palsy, for an operation in Germany, in the hope that it will improve their son’s quality of life. Photo: www.youghalonline.com Email: news@youghalonline.com

The Phelans are attempting to raise enough money to bring Keith to the XCell-Center Dusseldorf, Germany where they believe he could benefit from stem cell treatment. Following inquiries to the centre they were informed that Keith had a number of options: surgical or lumber puncture (where cells are withdrawn from the hip bone marrow, good cells are retained in the lab where they regenerate and are reinserted by lumber puncture). It takes five days to complete the procedure.

An account for the fund has been set up through the Allied Irish Bank and the family is already busy planning ways to make the campaign successful.

To donate to the fund: Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.

A beautiful bright October morning greeted the 60 or so cyclists who met at Barry’s Lane and the main man himself Keith got proceedings underway with a photoshoot before waving the cyclists off on the outward journey to Castlemarty.

A foodstop was made at “The Village Greengrocer ” in Castlemarty with the Walsh family pulling out all the stops by offering the cyclists some of the finest homemade apple pie and scones that East Cork has to offer.

The Club and the Phelan family would like to extend their thanks to clubman John Walsh and his family for opening their premises on a Sunday morning and accommodating the charity cycle with their fantastic hospitality.

Refulled and a tad heavier the group took off for the homeward journey back to Youghal with the wind at their backs.There to greet the cyclists was Keith and his family and with a couple of photos for the local media,three rousing cheers were given for young Keith.

Click Here to visit the Youghal Cycling Club Website.

More photos from charity cycle on the clubs Facebook page http://www.facebook.com/pages/Youghal-Cycling-Club/243784613767?v=photos#!/album.php?aid=239838&id=243784613767&page=3.

Following the recent launch of the Keith Phelan Appeal a group of local ladies decided to the kick start the campaign and help in the fundraising activities for Keith and what better way than by participated in the Evening Echo Women’s Mini – Marathon in Cork last Sunday, 26th September. Report: Michael Twomey Photo: Michael Hussey www.youghalonline.com
Email: news@youghalonline.com

The Phelan family from Raheen Park, Youghal, have launched a campaign to raise funds to sent their 11 year old son, Keith, who suffers from Cerebral Palsy, for an operation in Germany, in the hope that it will improve their son’s quality of life.

The Phelans are attempting to raise enough money to bring Keith to the XCell-Center Dusseldorf, Germany where they believe he could benefit from stem cell treatment. Following inquiries to the centre they were informed that Keith had a number of options: surgical or lumber puncture (where cells are withdrawn from the hip bone marrow, good cells are retained in the lab where they regenerate and are reinserted by lumber puncture). It takes five days to complete the procedure.

An account for the fund has been set up through the Allied Irish Bank and the family is already busy planning ways to make the campaign successful. “We are hoping that people can donate directly, help us with our own fundraising or hold events themselves.” Tony said.

Youghal Credit Union has already supported the fund and should be one of the many agencies in the town to lend its weight to the campaign. No certainties have been given by the XCell-Center about the degree of change that might result from the treatment, or indeed how quickly the signs of improvement will begin to show. That won’t stop the family from trying everything for Keith. “There are no guarantees that the treatment will work or what way Keith might progress. Anything at all that could change one of these things would be great,” Tony added. If Keith’s positive demeanour and welcoming smile is anything to go by then he has every chance of success.

One small step for Keith could be one giant leap for his family.

To donate to the fund: Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.

The Phelan family from Raheen Park, Youghal, have launched a campaign to raise funds to sent their 11 year old son, Keith, who suffers from Cerebral Palsy, for an operation in Germany, in the hope that it will improve their son’s quality of life.
By Michael Twomey | Photo: Michael Hussey www.youghalonline.com Email: news@youghalonline.com

When Tony and Mag Phelan of Youghal were given the news 11 years ago that their son Keith had suffered a bi-lateral Grade 4 Hemorrhage in premature birth, they could be forgiven for reacting with confusion.

It’s not the news a family expects or wants to hear, or can immediately understand. It meant that Keith’s quality of life would be severely restricted. His Dad explained. “He can’t walk, he can’t sit up,  he can’t dress himself, he can’t feed himself, he can’t write; his future is a computer.” Keith is quadriplegic (all four limbs are affected), suffers epilepsy and has Cerebal Palsy (permanent disorders of the development of movement and posture, causing activity limitation).

Now, following a chance viewing of a programme on TV3, the Phelan family, including Keith’s sisters, Kelly and Lyndsey and brother, Dean, has started a campaign to help Keith improve on his limitations. The Phelans are attempting to raise enough money to bring Keith to the XCell-Center Dusseldorf, Germany where they believe he could benefit from stem cell treatment. Following inquiries to the centre they were informed that Keith had a number of options: surgical or lumber puncture (where cells are withdrawn from the hip bone marrow, good cells are retained in the lab where they regenerate and are reinserted by lumber puncture). It takes five days to complete the procedure.

An account for the fund has been set up through the Allied Irish Bank and the family is already busy planning ways to make the campaign successful. “We are hoping that people can donate directly, help us with our own fundraising or hold events themselves.” Tony said. Youghal Credit Union has already supported the fund and should be one of the many agencies in the town to lend its weight to the campaign. No certainties have been given by the XCell-Center about the degree of change that might result from the treatment, or indeed how quickly the signs of improvement will begin to show. That won’t stop the family from trying everything for Keith. “There are no guarantees that the treatment will work or what way Keith might progress. Anything at all that could change one of these things would be great,” Tony added. If Keith’s positive demeanour and welcoming smile is anything to go by then he has every chance of success.

That strong personality shows itself in his school; Bun Scoil Mhuire, Youghal, where he has just started 5th class. “We are delighted he is going to mainstream school. He was really looking forward to going back as he said, ‘to meet all my friends’ and that does your heart good to see kids gather round him. There’s no bad feeling,” Tony remarked with pride. Keith also goes for various therapies at Enable Ireland, regularly.

Both Mag and Tony are all too aware of what a small change could mean to their son.“He would like to be able to do what his brother does. He watches us play football. Sometimes when the ball hits the chair I’ll say – that’s great defending, Keith!” Tony smiled. Help them to help Keith help himself. One small step for Keith could be one giant leap for his family.

To donate to the fund: Sort Code: 93-43-05, Acc. No.: 05841087. To contact to assist in fundraising or organise events, contact: 024-20843.