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Debut novelist Jayne Joso spent the major part of her youth in North Wales, starting at primary school in Bangor and growing up around Port Penrhyn and then moving to the foothills of Snowdonia. I cant imagine a more vivid and inspiring landscape to have grown up in, the North Wales coastline and the rolling hills and mountains are a gift to the imagination and soothe the soul in much the same ways as music and literature, which is an important theme of the novel. I guess those childhood influences run deep.
Soothing Music for Stray Cats , predicted on 23 April by Ian Thomson in the Times Literary Supplement to be one of the great, eccentric London novels, is a reflective novel set in central and north London. Even though the author is a young woman, the novel will appeal to a youthful male readership and NME fans, with its themes of male suicide, Samurai philosophy, male bonding, songwriting, and its first person male narrator. Driven by its distinctive colloquial voice, wacky monologues on subjects as diverse as Mike Skinner, Ellen MacArthur and Nelson, its philosophy is upbeat, committed to a world in which strangers still help each other, even though we can seldom intervene when it really matters. Catcher in the Rye meets Kenzaburo Oes An Echo of Heaven, by way of Anne Enrights The Gathering, the text is framed by two suicides, but the messages are positive, in favour of altruism, male friendship, and the camaraderie of strangers in straightened circumstances (the latter a topical theme for the Credit Crunch era). Set in a chilly February in Finsbury Park and central London with its tourist landmarks, the authors background as an architecture journalist shows through in her strong sense of atmosphere and city spaces. Literary aspects include the shadowing of Woolfs Mrs Dalloway, and beautiful imagery ranging from cricket, London Tube lines, failing shoes on city streets, naval heroes and monuments. Carrying cover endorsements from comedian and broadcaster Natalie Haynes and journalist Joe Moran, this is a contender for literary prizes, including the Orange.
The novels cover carries endorsements from top journalist Joe Moran (Skilfully melds the esoteric and the everyday, the surreal and the banal, to create a strangely gripping narrative full of dark humour, and comedian and broadcaster Natalie Haynes (An unexpected and moving story about the redemption of misfits and the consolation of strangers), as well as artwork by Japanese artist Hiroke Godengi, reflecting the authors Japanese connections. Having lived and worked in the country, and continuing to write extensively on Japanese arts & culture, Jayne Joso explains the Eastern inspiration for the novels character, manic student Kazu, struggling to survive as a lonely and isolated student in London,
I came across The Way of the Samurai when I was living in Japan. For Kazu, the single biggest influence on his life is Hagakure the code of the Samurai. But it was a British work of fiction that first enticed me to the country: Angela Carters Fireworks. This short story about a young Englishwoman and her Japanese lover in Tokyo, captivated me as much for its descriptions of space and environment as for the erotic elements. Fiction, and fiction reading indeed, are the main themes of Soothing Music for Stray Cats, with songwriting being included under the same banner. In the protagonist, Mark, I wanted to show a character both sub-consciously and consciously engaging with ideas and thoughts even snatches of sentences - presented in fiction. Great songsters such as Leonard Cohen and bands like The Clash and The Verve also help him face the crisis following his best friends suicide.... Another recurrent theme in my work, however, because of my tremendous passion for architecture, will always be finding the right place, be it geographical, physical or psychological.
Jayne Joso has written extensively on Architecture, including for Architecture Today magazine, and on Japanese arts & culture. Her first childrens book, How Do you Feel? was recently published by Benesse in Japan, and her first play, Chinas Smile, commissioned for Chinas Childrens Day, enjoyed a long theatre run and was later televised. This is her first novel.
Jayne will be signing her books at Llandudno Waterstones, Monday 18 May at 11am and 3p
In the year in which a film about his life was produced, Aberystwyth born Charles Bronson is now publishing a new book called Diaries From Hell - his diaries from Monster Mansion in Wakefield Prison. As one of the most notorious prisoners in the UK these new diaries show what life is really like and how difficult things are for him to fight for justice in such grim conditions.
Living in a cage in Monster Mansion, Wakefield Prison is as hard as it gets. Living with people like Robert Mawdsley (described as our own hannibal the canibal) leaves you in no doubt that these really are diaries from hell. Monster Mansion is the ideal place to study Loonyology the phrase created by Bronson for the crazy world we live in. The loonyology of the prison system that hes fought for 35 years would drive most people mad and to give up. But not Bronson, who continues his battle for justice in one of the most difficult conditions imaginable.
In these diaries, written in his own words, follow the thoughts, battles and dreams of Britains most famous prisoner in 2008. During this period he follows the production of the film, Bronson and meets the actor Tom Hardy who plays him in the film that was released to such great acclaim in 2009. You also get to know his friends and family who are so dear to him and share the joy of their visits and letters.
Diaries From Hell is also a book of loonyology with a soul and shows how proud Bronson is of supporting charities in all parts of the world. It shows Bronson as a man of warmth and talent, and includes numerous great art works and poems produced in his lonely cage in hell. It has been rumoured that Charles Bronson will settle in Aberystwyth, where his mother and brother still live, when he is released from prison.
Diaries from Hell is published by Y Lolfa on 10th of May, and copies can be ordered online from www.ylolfa.com .
An interview with Runaway Norm who will be appearing at the Left Coast Eisteddfod in Portland Oregon 2009. The Left Coast Eisteddfod is a Welsh performing arts festival. It's purpose is to provide a shop-window for contemporary and traditional Welsh culture in the North Western USA. It should also be one helluva party.
Americymru: Ok...who is Norm and why is he running and who from?
Geoff: Norm is a 10 year old Golden retriever who during our first couple practices loved to runaway in pursuit of female canines in the local neighborhood. A real Romeo he is. We once lost him for a few days as he chased tail only to find him through an online search of the county animal controls web site. Poor guy been picked up by the animal control so like a good friend we bailed him out.
Americymru: How did the band come to be formed and how long have you been playing together?
Geoff: We've been together for about four years now. Put together through a series of six degrees of separation. Tygh Colton (Guitar/Vocals) and Geoff Gillam (Drums/Percussion/Vocals) started their friendship in Jr. High School where each played in the school band but then went on to different colleges. Tygh met Matt Lavoie (Lead Guitar) at Oregon State where Matt and Tygh became Sigma Chi fraternity brothers and eventually played in a band together. The fraternity connection continued as Tygh was introduced to Nick Montgomery (Lead Vocals) through another chapter of Sigma Chi at University of Oregon. Fast forward to a Monday night in March 2005 and our first open mic performance. Tygh had called Geoff to play percussion for a 2 hour acoustic set with Nick, Matt, and himself. Through the fraternal networking of friends we brought about 100+ people. We played through a lot of nerves but had good feedback and the pub booked us for a weekend gig that night. Through another fraternity connection we found our missing link in Mike Yesenofski (Bass) and really took shape as a full band. Mike brought so much more musically to the group with his music experience and studio production background. We started writing more music, playing more shows and eventually purchased our own studio where we record and self produce all of our material.
Americymru: Who would you count amongst your foremost musical influences?
Geoff: I grew up with Jazz and 80's pop. Tygh was influenced with Steve Miller and Boston. The rest of the guys would probably mention anything from Oingo Boingo to The Beatles and Guster. I'd say the five of us really see influences in our own music through groups like Led Zepplin, Dave Matthews Band, Red Hot Chili Peppers, and Guster.
Americymru: How do you rate the current music scene in Portland? Would you say it was healthy? What more could be done to gain exposure for local bands?
Geoff: The Portland music scene is growing everyday. We've watched groups like Calobo play at the Crystal Ballroom and in the last year The Decemberists and The Shins. It seems like each year we hear another local group opening the ears of the nation. I think Portland's got a good music scene especially on the Indie side. Locally a lot of bands know each other and support each other. We play at the same spots and have crossover fan bases. If you can grow the fan base through word of mouth you know you're doing something right. The media outlets available to network are a great start but I would also love to see more local music festivals. There are some good opportunities through the local media to gain exposure but it's all about growing your fan base and music festivals are a great way to bring the cross over fan bases together.
Americymru: Several band members are of Celtic heritage ( Irish/Welsh ). Are there any Celtic influences in your music?
Geoff: Let's see, we have a mandolin and drink Guinness and Jameson on occasion. Oh, and our first gig was at a place called "The Dublin Pub". Coincidental influences? Maybe?
Americymru: Who writes most of the bands material?
Geoff: We all contribute to the writing process. Mike tends to write a lot of our melodies but we have each introduced a song of our own at one point or another. If a song doesn't have lyrics Nick and I (Geoff) usually work through that process. New music is one of the best parts of being in this group. The excitement of creating a new song and playing that for the first time for someone is always a highlight.
Americymru: Any plans for live performances in the near future ( A plug for the Eisteddfod is perfectly acceptable here.....lol )
Geoff: You can find all of our show dates on line at www.myspace.com/runawaynorm.com . We're very excited to play at Eisteddfod this year. To play at the Crystal Ballroom and share our music with the crowd and other artists will be a great experience for us. Get ready to dance on air with Runaway Norm.
Americymru: Any ambitions to tour in Europe?
Geoff: If we all toured Europe I'm not sure we would end up in the same country or even bring any instruments. One guy might be in the Alps with a backpack, another in Ireland with a set of golf clubs, maybe a glass of wine in France or Italy. Our music aspirations in Europe are not on the horizon but that's not to say if the passports and opportunities aligned we wouldn't board the plane. If we do tour Europe we'll defiantly have bring Norm a treat when we get home.
Americymru: Where can people hear/purchase your music?
Geoff: You can find the music of Runaway Norm on iTunes, CDBaby.com, or on MySpace as well as our live shows.
Americymru: Any other message for the members and readers of Americymru.
Geoff: We hope you enjoy our music and come raise a pint with us Friday, August 21st, 2009 at Eisteddfod in Portland, Oregon.
Read Wayne Yendle's article 'A Little About Ieuan'
Americymru: Can you tell us how the IeuanTheLion Memorial Fund came to be set up?
Wayne: During Ieuan's latter months we vowed that no other family would suffer the uncertainty of not being able to treat a condition because of no diagnosis and agreed that when the results came from the post-mortem we would dedicate our lives to raising funds in Ieuan's name for the condition that had robbed him of his life. However that was not to be there were still no answers. We have therefore set up the fund to help those who helped Ieuan when the doctors couldn't. To them we shall be eternally grateful .
We have named the fund Ieuan the Lion purely due to Ieuan's love of lions and to represent the amazing, unmeasurable amount of courage that he showed. He had the strength and heart of a LION.
Americymru: . What are the five charities that you will be supporting?
Wayne: LATCH ( is a voluntary organisation set up to support the special requirements of the children's oncology centre in Wales which is based at the Children's Hospital for Wales to help affected families and promote research in childhood cancer)
TY-HAFAN CHILDREN'S HOSPICE (provides respite care for sick and terminally ill children and end of life care)
HCPT GROUP (takes 10 disabled children each year for a Pilgrimage holiday to Lourdes in France each Easter for a weeks respite),
CHRISTIAN LEWIS Trust (Are probably best known for their Holiday Programme which ranges from luxury static caravans on specially chosen sites situated on the coast in Wales, where the family can get away from the pressures of hospital and treatment, to resort holidays in both Walt Disney World in Florida and Disneyland Paris where the Trust has partners able to provide a unique programme of supervised and special facilities. The aim is to provide memories intended to last for a lifetime).
GREAT ORMOND STREET (is where a lot of our sick children from South Wales go for specialised treatment).
Americymru: How did these charities help you during your sons illness?
Wayne: During Ieuan's illness all the charities that we are supporting helped and supported Ieuan by allowing him to experience many happy and enjoyable times in his short life.
Latch - provided holidays,Christmas Parties, trips to London to Houses of Parliament to have tea with the Speaker of the House, Visit Prince Charles to dress the Christmas Tree at Clarence House, and on January 29th 2007 in his last year with us, he braved a very long trip to London yet again, escorted by Welsh Guards to plant a tree in Speakers Corner at the Houses of Parliament and managed to put the first shovel of earth to plant that tree, these and many more trips would not have been possible without Latch. They also supported Ieuan's family providing travelling expenses on trips to Great Ormond Street Hospital.
HCPT Group - gave Ieuan the chance to experience this wonderful trip to Lourdes three times in his short life, which was a wonderful experience for Ieuan, a chance to get away without his parents knowing he was taken care of by these wonderful people, as this is all voluntary but these carers, he made wonderful friends.
Christian Lewis - provided a lovely holiday in August 2006 to Porth Madoc in North Wales, it was the last holiday that Ieuan spent with his mam and dad, and it was made possible by this charity.
Great Ormond Street Hospital - Cared for Ieuan during his illness for specialised treatment that could not be offered to him in South Wales.
Ty Hafan Children's Hospice - Can only be described as a wonderful peaceful, happy place where living Angels are who care for these very special children in times of need. Ieuan was cared for by these wonderful Angels, and made his last two months and two days on this earth possible, he was bathed everyday, dressed as if he was up running around, even though he was asleep, they looked after and cared for his family, and everything was possible at Ty-Hafan, in one way or another there was no such word as NO, to these Angels and all the other charities we will be eternally grateful.
Americymru: How supportive have people been so far? Anyone in particular you want to give a mention to?
Wayne: We have been overwhelmed with the response shown particularly in our local community, during a recent fundraising event we were inundated with raffle prizes donated by local businesses and shops in the Town Centre. We have also received two anonymous donations both by elderly neighbours, one being 2500.
It is especially heart warming when these people did not even know Ieuan and have chosen to help us. The biggest appeal seems to be the fact that by making a donation they are supporting five charities and helping the children of South Wales.
Americymru: What events have been organised so far as a part of your fund drive?
Wayne: An Evening of Music and Song was held on 7th March, 2009 which included live entertainment from Ieuan's cousin Robert Fletcher who named his band for that evening "The Lion Kings, Ieuan's Cousins Scarlet and friend Corissa sang, Ben Hurley a local male singer and Holly Holyoake both came and supported the show with their wonderful singer talent. A lot of money was raised on this evening with the entrance fee and Grand Draw totalling nearly 4200.00, it was a fantastic event which will be held annually around Ieuan's Birthday Memorial each year. There was also a Christmas Carol Evening at two local churches that Ieuan attended and was an alter server at the one, raising nearly 400 and also family and friend did trick or treating on Halloween raising 26.43 two of the children involved in this were Ieuan's Cousins who were only 2 and 5 years old.
Americymru: What future activities are planned?
Wayne: We are currently in contact with Chris Needs and we are hoping to arrange an evening of entertainment in Newport. We have a Halloween themed evening for our local youngsters arranged for October. We are in the process of arranging a Sponsored walk but are undecided at the moment as to the venue. A lot depends on the length of the walk and whether we would encourage children to participate. Coffee mornings, Car boot sales, Garden sales. Sponsored Rugby Match, Soccer match, Live event featuring local Rock Bands, Bi-cycle rides.
Americymru: A friend of yours, Michaela Cuddy, is running the London Marathon in support of the fund. Care to tell us a bit more about that?
Wayne: Michaela is very dear friend of the family, she went to UWIC University with Ieuan's older brother Louis. She felt that she needed to do fund raising and Ieuan was her drive to enter the London Marathon. The London Marathon is an annual event which is 26miles around the streets of the City of London our Capital of Great Britain. She has raised over 3000, and she took 4 and half hours to complete the Marathon and this is a wonderful achievement for someone who has never run a marathon before, we are sure Ieuan was by her side.
Americymru: How can Americymru members help? If people want to raise funds to assist you, what could they do?
Wayne: You can help us just by being there and simply reading all about Ieuan, helping us to keep his name ALIVE.
As previously mentioned our main aim is to raise awareness of these five charities and in doing so raise funds to help the children of South Wales.
It is extremely expensive to run these organisations but what a difference it makes to these sick and terminally ill children and the help it provides to the families who love and care for these children:-
TY HAFAN - Requires 2 and a half million annual income to operate.
HCPT GROUP - Requires 1000 for each sick child they take to Lourdes.
LATCH - Helps to make dreams come true for the children, whether it be a day trip to a theme park or trip to Florida so their outgoings are impossible to itemise. They also provide Social Workers to help and support the child and their family in these very stressful times of illness.
CHRISTIAN LEWIS - Requires 800plus to offer a holiday for the child and immediate family.
GREAT ORMOND STREET HOSPITAL - - Once again is impossible to state any figures as it would simply be millions.
We would appreciate it if you could make a donation no matter how small, every penny really does count. Maybe arrange a sponsored event, whatever it is we would love to hear about it and will add you as a sponsor on Ieuan's site.
You can support Ieuan The Lion in many ways, from making a donation to hosting a charity event, from corporate sponsorship to a cake sale at your local school all donations no matter how small will go directly to children who need your help.
Here are just a few ideas:-
Donations you can donate securely through this website, using your credit or debit card or your PayPal account,or if preferred cheques may be made payable to Ieuan The Lion Memorial Fund and sent to :-
42, Milman Street, Newport, South Wales NP20 2HR.
Activity challenges are a great way of involving friends and workmates in a worthwhile cause: Sponsored,cycling marathons,walks, organised abseiling, dragon boat racingthe list is endless. And of course well help you promote your fund raising event through our website.
Corporate sponsorship. Companies can gain valuable branding and profile benefits through sponsorship of Ieuan The Lion's Fund, while at the same time ensuring that they are supporting a fantastic cause. For more information about what your company can do, contact us by email at wayne.yendle@ntlworld.com or by phone on 01633676286 ( Editors Note:- From the US call - 011441633676286 )
Non uniform day. Schools can help by allowing students to make a donation to attend school in their own clothes The list is endless Trivia Quizzes, Fancy Dress day at work, Guess the baby competition, Concerts, Fashion shows, Car boot sales, Sponsored silence you choose.And of course well help you promote your fund raising event through our website.
Americymru: Any final message for the members and readers of Americymru?
Wayne: We are grateful to you all for showing an interest and would appreciate it if you could only manage to read about Ieuan's life and the wonderful work these charities do.
Obviously our aim is to raise funds and awareness to repay these wonderful people who helped us when the medical profession could'nt and by doing this we are keeping Ieuan's name alive
THESE ARE THE LINKS TO THE FIVE CHARITIES WE SUPPORT
Interview with Wayne Yendle HERE. Visit the IeuantheLion Memorial Fund page HERE.
Ieuan Jonathan Thomas-Yendle, born on 4th March 1994 and flew away on 3rd July 2007.Youngest son to Rose and Wayne and a new brother for Louis and Ben who were given the honour of naming him. Louis chose Ieuan after Ieuan Evans the Welsh Rugby Player and Ben chose Jonathan after Jonathan Davies another Welsh Rugby Player. These names were then put into a hat and drawn out as Ieuan Jonathan.
Ieuan made a very quick entrance into this world, it was that quick his dad Wayne did not make it to the actual birth.
He was beautiful, like a little mouse, another Son, and a new baby Brother for Louis and Ben, Grandson to Maureen and Billy, Gwenny and the late Ken. Nephew to Helen and cousin to Rebecca he had another eight weeks to wait for his new baby cousin Scarlet to arrive. He was our third Musketeer.
As the weeks went by Ieuan began to thrive and grow more beautiful, beginning to notice, smile and make baby noises.
Going into the second week of July 1994, Ieuans feeds became a bit of an ordeal, refusing to take them after only a small amount, but he seemed alright in himself, a week passed and it was still a bit of a battle, and then a tooth appeared, Ieuans mum was so pleased, she rang her mum to say panic over Ieuans cut a tooth and assumed this was why he was off his feed. But things still did not seem right.
On the Thursday of that week it was baby clinic and Ieuan went along to be checked and weighed and the health visitor did not seem to be concerned about anything we then went down to Ieuans nana Mo, Mos with Helen and Scarlet. Helen and Nana Mo were still not really happy with Ieuan and his feeding pattern. That afternoon we contacted the GP with our concerns as Ieuan seemed to be blue around his mouth, we were told to take him to the hospital to get him checked by the paediatricians. When we arrived Ieuan was seen to as priority and was admitted to the childrens ward, where he was put on one and half litres of oxygen as the blueness around his mouth was because his body was lacking in oxygen. Things seemed to move quite quickly, being connected to a heart machine, oxygen monitor amongst many other checks and blood tests. Ieuans consultant did think that Ieuan may have to be moved to the Heath Hospital in Cardiff as he was so ill and at one point did not think he would make it through the night, but with the help of the medication and care Ieuan pulled through, and we were in hospital with him for about three weeks.
He was due to be Christened whilst he was he hospital with a big celebration party, but unfortunately this had to be cancelled, and there was concern that he may even have to be Christened in hospital. We overcome this and he was Christened in St. Michaels, Newport on 7th August 1994.
At this point we were still in the dark as to what the problem had been at one point the doctors thought he had Eosinophils Leukaemia as his Eosinophils level was raised quite high.
Ieuan was referred to the Eileen Thompson Oncology Clinic Llandough Hospital in Penarth to see if they could find out what the problem was. After undergoing lots of blood tests, lumber punctures scans and various checks in March 1995, we had a telephone call from Oncology Clinic at Llandoungh to ask us to go down to see the Consultant (Dr. David Webb) to go through the results and the findings.
Ieuan was diagnosed with Hypergammaglobulin Anaemia (CD 40 Lygand Deficiency) which is a rare immune deficiency of the blood.
This meant that Ieuan would have to receive monthly intravenous infusions of Sandoglobulin which is a replacement of the immune system as his body did not produce this as it should and also take antibiotics every other day as a cover. Neutropenia was also a problem that Ieuan had, which is part of the immune system, if the Neurtrophils level is down in your body you are open to a lot more germs. Children are more open to infection, and the areas of concern in Ieuans case were mouth ulcers like craters, ear and throat infections. Ieuan had to have a daily injection of G-CSF to combat the Neutropenia as you can imagine this was not very nice for Ieuan being only just one year old to have everyday. Mum and dad was shown how to administer this on a daily basis, otherwise it would have meant either a nurse calling to the house everyday or going to the hospital daily, this would have been even more traumatic, but we battled on and even though Ieuan did not like it, we explained why and it became part of his life. He was very very brave. He also had weekly blood counts which we would do at home and then take them up to the hospital to get checked out. This procedure went on for a number of years on a weekly basis, but Ieuan still kept smiling.
Ieuan was admitted to hospital when a bad infection occurred and he would have intravenous antibiotics and with his monthly infusion and regular blood counts believe it or not lived his life to the full, he did not like having to go to the hospital to have needles put into him, but we explained that this had to be done to keep well. Llandough Hospital Oncology Clinic became part of our life, and the doctors, nursing staff and play specialists made the visits so much easier for Ieuan and his mum. They were our friends too.
Ieuan had very little time off school, only for hospital appointments and of course if he was not well.
An example of what could happen if his neurtrophils were low, we were on holiday in Tenby, we had been there for two weeks, on the last day Ieuan accidentally slipped in the shower and banged his mouth. Ieuan became quite poorly and on our way home from Tenby the next day we rang the hospital to explain what had happened and he had now developed a temperature, they told us to call in and get his blood count checked, this we did and the blood count showed that he was Neutropenic. Ieuan was then admitted to hospital with an infection in his mouth as he had bit his lip when he fell in the shower, Ieuan was there for two weeks on intravenous antibiotics.
Dr. David Webb Ieuans consultant left to go to work at Great Ormond Street in London, and his new consultant was Meriel Jenny. Ieuan had a lot of confidence in her. As time went by Dr. Jenny wanted us to go up to Great Ormond Street to see Dr. Graham Davies a Haematologist to have regular checks on his liver, as all the medication he received may have some impact on the organs within the body.
We went up for this visit and we were hit with another problem that could happen with this immune deficiency (CD40 Ligand Deficiency). If Ieuan caught the germ Cryptosporidium from drinking water, where a person who did not have this immune problem would have severe sickness and diarrhoea, in Ieuans case the germ if not detected could live in the liver and slowly destroy this organ. This meant we would have to go to Kings College Hospital on a yearly basis for Liver and Spleen scanning. This was a bit of a blow, but as long as Ieuan was ok we would go anywhere. Dr. Davies then prescribed more antibiotics to take on a daily basis to cover this germ and Ieuan was not allowed to drink any water bottled or tapped, we had to have a special filter tap fitted which hopefully kept this bug away. Ieuan was a very sensible your boy and understood no drinking water only from his special filter from home or sterile from the hospital, the school was given a regular supply of this.
The only cure for this immune deficiency was a bone marrow transplant.
After reading this account of Ieuans illness as you can imagine it was a lot for a young child to cope with but he did. It was part of his life and as long as he had his treatment and medication and it kept him well he got on with it. Smiling singing and dancing and doing all the things he loved.
In March 2004 Ieuan was now 10 years old, it was very mild but we noticed Ieuan seemed to be slightly unsteady, holding things, a bit clumsy, and Ieuan in the past had been very independent. Ieuan had beautiful handwriting, this also was changing. We mentioned this to his Consultant and she referred him to Dr. Johan Water De Naude, Neurological Consultant at the Heath and after some tests he was diagnosed with Sydenhams chorea, which is a movement disorder that can develop after a certain infection and hopefully go like it comes, and could get worse before it gets better. Ieuan learnt to cope and live around this horrible thing in the hope one day it would go like it came and at one stage seemed to plateau.
As time went by Ieuans walking became very weak and his speech began to disappear, but we still lived in hope. In September 2005 Ieuan started the High School at St. Josephs but after only about two weeks had to have a wheelchair and assistance from teachers and sixth form students to enable him to go to school.
Ieuan underwent many Brain Scans, lumbar punctures, blood tests, Dr. Johan Ieuans Neurologist informed us that whatever this problem was it had now gone beyond Sydenhams chorea. Ieuan had visits from two professors and his problem was shared with European Countries, but no positive answers were coming through.
In 2006 Ieuans health was deteriorating and was virtually solely dependent on his parents.
In November 2006 for four weeks he was given a treatment Rituximab to see if this would help with what was going on within the brain area of his body and was also given a higher dose of the Sandoglobulin as this can sometimes help with any swelling within the brain, he developed a twitching within his body which did lead to a massive fit, this was so frightening especially for Ieuan, this then had to be controlled by more medication. In December 2006 Ieuan finished this Rituximab treatment we then had to wait and see if this would have any effect.
After all this intense treatment Ieuan went back to school for 4hours a day in the middle of January 2007, he was exhausted when he used to come home and would sleep for about 6 hours and then wake up for something to eat, this went on until February 14th 2007 Valentines Day, he did not go to school again after this date as he was too weak, he managed to get to his 13th Birthday on 4th March 2007 where all his close family and friends came to the house for his birthday party and we had a clown, he still managed to smile and looking back on it now it was just unbelievable how this young boy kept going, having everything taken away from you bit by bit with no explanation.
On 9th March 2007 Ieuan was very unwell he was sleeping a lot he did not have the energy to do anything for himself, he had a turn where he was focused with no movement, we had to take him to hospital where he was admitted.
Ieuan was now being fed through a tube as his swallow was now very poor, but we knew he was now getting all the nourishment his body needed and we were so grateful for this for him.
After two weeks Ieuan had started to put on weight, and even though he could only communicate with expression and his thumb he did not look so gaunt, and we still had hope.
Dr. Johan Ieuans Neurologist suggested a Brain Biopsy as all the other tests, scans gave no lead to the problem, this was decided and the procedure was carried out.
We lived in hope for our boy, but nothing came back only slight inflammation of the brain.
On Thursday before the Easter Weekend we brought Ieuan home from hospital to nurse him, this weekend was the worst weekend of our lives especially our beautiful boy who could not tell us where it hurt or how he felt, he just lay there crying, little did we know this was a transitional period where Ieuan was losing his sight. Another week passed and we nursed Ieuan at home with lots of medication and help from the community nurses.
We were then approached by Ieuans consultant to see if we would like to take Ieuan to Ty Hafan Children's Hospice you can read about this story within the website.
On 30th April, 2007 Dr. Jenny Ieuans Consultant told us our worse fears, that there was nothing they could do to help Ieuan and his body was beginning to shut down, it could be weeks or months.
We then went back to Ty Hafan and were there for 2months and 2days and on 3rd July 2007 at 4.40pm Ieuan flew away to a better place.
On 4th July Ieuans body was taken to University Hospital in Wales for a post mortem.
There were fears that this horrible thing that attacked Ieuan could have been CJD (Creutzfeldt-Jakob disease ) Because of this suspicion he was Police Escorted to the pathologist.
In February 2008 we received the results of the post mortem it was not CJD. Encephalitis was found, but the pathologist could not find why this had occurred, he named Ieuan as a very unique case. So even his illness was unique just as he was through his life.
Samples have been kept by the pathologist with our permission to send over to America to see if they can research into unknown brain diseases and perhaps one day we may have an answer and this research may help somebody and save them the suffering and torched that Ieuan our very brave Lion King had to bare.
Wayne Yendle
