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Joe Way and his story
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June, 2008 joes new web pagePress Releasewww.joeway.co.ukThe website is going live on Wednesday 4th June four weeks to the day that 4 year old Joe Way died.His web page is www.joeway.co.uk (live from Wednesday)Joe is the inspirational little boy who touched people’s lives around the country and beyond.His story of hope and fighting against all the odds with a cheeky smile has made what could of been the worse of times the best of times.His story continues to inspire individuals and business to donate funds to The Precious Lives Appeal to build a children’s hospice in Cornwall. We have since his funeral received over £3000 in Donations.Joe was always too ill to travel to Devon to stay at the hospice which is why we are supporting the need for this facility in Cornwall.Our hopes for Joe are to tell his story and promote the symptoms of Angelmans Syndrome, Steven Johnson Syndrome and offer hope to other people who have or know someone who has these conditionsWe also want to raise funds for the Precious Lives appeal which help life limited children and their family’s, his website will continue to give hope with Joes amazing story so others may be inspiredAt the end of Joes service 200 people let off 150 balloons and received sunflower seeds to plant to remember Joe Read his story be inspired give on line www.joeway.co.uk May, 2008 Portsmouth The News (News paper)The brave face of courage of little Joehttp://www.portsmouth.co.uk/portsmouth/The-brave-face-of-courage.4107644.jpPublished Date:
22 May 2008 By Alex Forsyth
THE grandparents of a little boy who died after losing a four-year battle with two rare illnesses have paid tribute to his courage.
Brave Joe Way was born with the genetic condition Angelman Syndrome, which left him severely disabled. The four-year-old spent most of last year in intensive care where he beat off 10 different superbugs in just eight months. But he developed a second rare condition, called Stevens-Johnson Syndrome, which caused blisters over 80 per cent of his body and internal organs. He survived an attack of the disorder in July 2006, but the condition returned and Joe died surrounded by family on May 7. Grandparents Chris and Sid Way, of First Avenue, Farlington, Portsmouth, said: 'We were so very sad to lose him. He really has gone through so much and still continued to charm everyone with his stunning smile, but he had suffered so much. 'As grandparents it has been hard to watch our grandson fighting so bravely.' Joe, who lived in Newquay with mum Claire and dad Matt Way, a former Crookhorn school pupil, inspired a mammoth fund-raising effort with his constant courage and cheerful smile. Family and friends raised more than £6,000 for the high dependency unit at the Royal Cornwall Hospital where he spent most of his time. Portsmouth man John Simmonds completed the Great South Run on Joe's behalf and donated the money to the cause. Mrs Way, 56, added: 'We are so very proud and in awe of how our son Matt and his wife Claire have loved and cared for Joe. 'They have been with him every step of the way and he could not have wished for better parents. 'We would like to thank all our family and friends in the Portsmouth area who supported fund-raising efforts for Joe – none of it will be forgotten.' His parents will continue to raise funds in Joe's name for the Precious Lives Appeal. The full article contains 337 words and appears in NS-City newspaper.
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May, 2008 Cornish GuardianBALLOONS FILL SKY IN TOUCHING FAREWELL TO 'MIRACLE BOY' JOE
Balloons filled the sky above St Mawgan during a touching farewell to a four-year-old boy whose life and happy spirits "confounded the textbooks". Among the congregation were Joe's parents, 37-year-old Matt and 34-year-old Claire Way, his six-year-old sister, Megan, and two-month-old brother, Finn.
Speaking during the service, Mr Way told of his son's resilience and happiness in the face of all his health problems. "Joe always had a smile on his face, that was the way he dealt with it," he said. "Joe made the worst of times the best of times. He had a smile that could catch you and so many people were touched by him, even if they spent one day, a couple of hours, or a few years with him. "We are very privileged to have been his parents and we will always love him. We thank Joe for being the best little man that he could be." The service featured hymns, prayers, the lighting of candles and a slideshow of pictures of Joe during his short life. The Rev Chris McQuillen-Wright paid tribute to Joe's fighting spirit. He said: "Joe was unique. He confounded all the textbooks. He always did the total opposite to what the textbooks said he should do. "He gave each and every one of us his smile. He's not the type of boy we need to try to remember, he is simply the kind of boy we will never forget." At the end of the ceremony, the congregation were given balloons and cards for people to send their personal messages for Joe - an idea thought up by his sister, Megan. The service then spilled outside on to the streets of St Mawgan, as about 150 of the balloons were released - climbing skyward in the light wind. Sunflower seeds were also handed out so people could plant them in memory of Joe, to remind people of his bright and inspirational spirit. The family then went on to a private interment. A reception at the Bedruthan Steps Hotel followed. Fund-raising for the Cornwall Precious Lives Appeal to build a children's hospice in the county is still ongoing in Joe's name. Anyone wanting to make a donation can call Andrew Henwood funeral directors on 01637 851199 or send a cheque with Joe's name on the back to 74 Edgcumbe Avenue, Newquay, TR7 2NN. Those who want to donate direct to the Precious Lives Appeal can go to www.chsw.org.uk Daniel Williams Community Editor Newquay Guardian May, 2008 A poem we always thought helpedWelcome to Holland
By Emily Perl Kingsley
‘I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to imagine how it would feel. It is like this…When you are going to have a baby, it is like planning a fabulous vacation trip… to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, Michaelangelo’s David, the gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, ‘Welcome to Holland’. ‘Holland !?’ you say. ‘What do you mean Holland? I signed up for Italy! I am supposed to be in Italy! All my life I have dreamed of going to Italy!’
But there has been a change in the flight plan. They have landed in Holland and there you must stay.
The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go out and buy new guide books. You must learn a new language. You will meet a whole new group of people you would never have met. It is just a different place. It is a slower pace than Italy. It is less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, ‘Yes, that is where I was supposed to go. That is what I had planned’.
The pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you did not get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
May, 2008 Joseph-Luc Way sadly passed away on Wednesday 7th May 2008
Joseph-Luc Way sadly passed away on Wednesday 7th May 2008
He was dearly loved and so many people were involved in his precious life. We want to thank all of you who have supported Joe and us as a family. Joe’s farewell service will take place on Friday 16th May 2008 at 2.00pm It will be at the church of St Mawgan where Joe was baptised. (Please see the link for a localised map and information about the church) www.stmawgan.org.uk the service will be conducted by Reverend Chris Mcquillenwright. It is important to us that family and friends are with us and the service for Joe will be child friendly and all are welcome at the service. An important part of the day for Megan will be Megan’s idea of a ‘sending our love and messages to Joe using balloons’. Labels and balloons will be available at the church for your personal messages. The private internment at the church-yard afterwards is for immediate family. We would like to invite everyone at the service to make their way to The Bedruthan Steps Hotel ahead of us to celebrate Joe’s life. www.bedruthanstepshotel.co.uk The dress code for the day is smart/casual. Rather than floral tributes – as a family we will continue to raise funds in Joe’s name. The money will go to the Precious Lives Appeal for a children’s hospice to be built in Cornwall. (The nearest children’s hospice is Barnstable North Devon – Little Bridge House) Joe did not manage to visit Little Bridge but they have been very supportive to us as a family. If you would like to make a donation in Joe’s memory for this appeal the details are as follows: Please make cheques payable to “Children’s Hospice Southwest” and write on the back “Joe Way”. Cheques can be sent or given to Andrew Henwood funeral Directors. (Address: 74 Edgcumbe Ave Newquay Cornwall TR7 2NN Telephone 01637 851199) Information about Precious Lives Appeal www.chsw.org.uk
We thank you for your love and support
Matt, Claire, Megan and Finn
On behalf of Joe Way Please note anyone who knows someone with Angelmans or Steven Johnson Syndrome: Joe died due to complications with his lungs along with many other complications which built up over several years. His medical history is unique April, 2008 Fund raising for one of Joes causes
Fund raising for one of Joes causes Anyone who wants to help Jamie with sponsoship please contact us March, 2008 Joes brother Finn Piran Way arrived
Joes brother Finn Piran Way arrived on Thursday 13th March weighing 7.13lbs. All seems well with Finn and Joe with his big sister Meg have been making a real fuss of their new little brother.
Joe was looked after by his Diana nurse Michelle as well as Janine (one of the owners at Hendra), Mandy (who looks after Joe at home) and was then taken in by the hospitals HDU during Claire’s labour.
We cannot thank the staff (who are good friends) who helped us with Joe and where a great support once again whilst family and friends arrived to help.
People who support us with Joe make his quality of life and ours so much the better and the help we have had with Finn’s arrival has been great.
March, 2008 Joe gives £3000 to the Ronald McDonald House BristolPress release from the parents of Joe Way
Local Newquay boy Joe Way has been given a helping hand to sponsor a room for parents at the RMH in Bristol where his mum, dad and sister stayed.
Joe who has a rare genetic condition called Angelmans Syndrome was dealt a second blow during the summer of 2006 when he had a rare reaction called Steven Johnson Syndrome this led to his body blistering outside and internally resulting in complete organ failure which has left Joe with many complications and a limited life expectancy.
Joe spent over six weeks of his four and half month’s admission in Bristol’s Paediatric Intensive Care Unit. In all he spent the best part of 18 months in hospitals and currently needs round the clock care at home.
We decided as a thank you from Joe, to raise £3000, to sponsor a room at the Ronald McDonald House which provides accommodation and supports families during these difficult times.
Denise Johnson-Carr, Charity Manager at Ronald McDonald House Bristol said “The service and facilities that we provide can sometimes be the difference between a family coping and not coping during what is probably one of the most stressful times of their lives. We have families that stay with us for several months and we get to know many of them very well. We often have families come back to visit us after their child has been discharged from hospital. They are always welcome and it is nice to keep in touch.” Joes mum Claire said “The house was a real help during the worst of times and to have a room named after Joe is wonderful. Hopefully Joes fight and spirit will help give families using the room hope” The money has been raised by family, collection tins, business donations from abroad as well as locally including Newquay Lions and Hendra Holiday Park where the family live. Joe’s grandparents in Cheshire had colleagues from around the world making donations after seeing his story in the National UK papers. A third of the money was raised from payments from national newspapers and magazine articles about Joes condition including Closer magazine circulated in the UK and its New Zealand equivalent. Joe’s dad Matt said “The room will be a great comfort and a place for parents to recharge. The room will be named after Joe and will include a plaque with some words of hope. Newquay parents and other families from Cornwall and the South West could all benefit from the room in the future”. Over the last 16 months Joe has inspired fund raising totalling £14000 even though he has been repeatedly in hospital with various complications.
Please contact Matt or Claire Way on 07761079454 Or e-mail mw@hendra-holidays.com
For details of Joe’s disability Angelmans Syndrome go to www.angelman.org Information on his reaction Steven Johnson Syndrome go to www.sjsupport.org See Joes BLOG page http://joe-angelmans.spaces.live.com To learn more about the charity you will be supporting go to www.rmhbristol.com or contact Denise Johnson-Carr on 0117 908 1375
February, 2008 Joe last few weeks Feb 18th 2008
He has had a lung infection, bad fitting and very strange temperature problems with his body temperature going as low as 34.2c for no clear reason. He has been out since Wednesday and although not him self seems better today.
He now needs two nebs a day to hold the bug which is in his lungs at bay. He has also come of one of his fitting drugs in case it is affecting his thyroid glands as the thyroid levels where low in his body.
Enjoy the photos and the video.
Newquay Lions help JoeNewquay Lions help Joe
Once again the Lions help Joe with his £3000 target to sponsor a room at the Ronald Macdonald House in Bristol.
Ken Clarke MBE hands the cheque over to Joes Dad Matt, Joe was back in at HDU in Treliske with a lung infection
December, 2007 Joe hits the Ice at EdenJoe, family and friends hit the Ice at Eden
With just a phone call to Eden the staff organised Joe to be taken on the ice in his wheel chair.
Joe, Megan (sister age 6) mum and dad where joined by friends The Robinsons and Joes grandparents to enjoy some ice skating at Eden. Joe has been out of hospital and Enjoyed Christmas at home.
The ice skating was great fun and the staff where very helpful; we would recommend this to anyone. Enjoy the video and Happy Christmas from Joe and Meg. December, 2007 Joe back homeJoe is back home
He only stayed in hospital for a couple of days and is now home.
We all went to see Santa with Tina, Lee, Jake, Meg and again last weekend with Cathy, Dave, Fin, Drew and lots of thier friends. He has been on good form although sick a few times but we think christmas should be spent at Home the way things are going.
We are trying to take him to Eden skating this weekend so watch this space. December, 2007 Joe went into hospital todayBack In Hospital
Joe went to Treliske today to possible get a blood transfusion as his platelets where low. They went back up but the Docs thought he may have a collapsed lung as his Chest infection had not gone and he sounded bad again.
He is on IV and oral antibiotics and after an X-ray it seems his lung is not collapsed but it still looks heavily infected.
He was in good spirits and has a rest bite carer with him tonight in his room to keep an eye on him.
We hope he will be out over the weekend. Matt (Dad) December, 2007 Joes back at HomeHe is back
Joe came back home on Tuesday, his kidneys are working back to what they where.
He has a chest infection but seems to be coping ok, he is taken it easy for a while.
 November, 2007 Joe is back in HospitalJoe back in Hospital
Joe went in Friday night to HDU as his fortnightly blood test showed his kidneys where not working right making his sodium levels dangerously low.
He was moved to Sennen ward Saturday and although his sodium is better after IV's he has now started a chest infection which has hit him hard.
Lets hope he can fight this off and get home soon.
 November, 2007 Joes halloween and fire work nightJoe enjoys a night of fun at Hendra's Halloween party and a trip out to Polperro for the fire works.
He was joined by mum, dad and Megan as well as his grandparents and cousins from Manchester. WELL DONE: NEWQUAY PUPILS RAISE £125 TO HELP JOE
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