Joe Way and his story

joes new web page

Wed, 04 Jun 2008 15:41:44 GMT

Press Release

www.joeway.co.uk

The website is going live on Wednesday 4^th 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 conditions

We 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 inspired

At 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

Portsmouth The News (News paper)

Mon, 26 May 2008 06:52:11 GMT

The brave face of courage of little Joe

http://www.portsmouth.co.uk/portsmouth/The-brave-face-of-courage.4107644.jp

Joe Way

Published 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.

Page 1 of 1

Last Updated: 22 May 2008 8:33 AM
Source: NS-City
Location: Portsmouth

Cornish Guardian

Wed, 21 May 2008 08:47:08 GMT

BALLOONS FILL SKY IN TOUCHING FAREWELL TO 'MIRACLE BOY' JOE

Be the first reader to comment on this story

09:00 - 21 May 2008

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".

Joe Way, who was born with a rare genetic condition, was labelled a 'miracle boy' after surviving meningitis, a potentially deadly skin reaction, and numerous superbugs.He died two weeks ago today, however, after a rapid deterioration in health.

Nearly 200 people packed in to St Mawgan Church on Friday for a service to say goodbye to Joe, who was known for his smile and his happy demeanour.

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

A poem we always thought helped

Tue, 20 May 2008 21:43:39 GMT

Welcome 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.

Joseph-Luc Way sadly passed away on Wednesday 7th May 2008

Sat, 10 May 2008 17:10:31 GMT

Joseph-Luc Way sadly passed away on Wednesday 7^th 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 16^th 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

Fund raising for one of Joes causes

Sun, 06 Apr 2008 22:45:34 GMT

Fund raising for one of Joes causes

Anyone who wants to help Jamie with sponsoship please contact us

Joes brother Finn Piran Way arrived

Sun, 16 Mar 2008 21:33:57 GMT

Joes brother Finn Piran Way arrived on Thursday 13^th 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.

Cornish guardian March 2008

Wed, 12 Mar 2008 20:43:31 GMT

Joe gives £3000 to the Ronald McDonald House Bristol

Tue, 04 Mar 2008 19:08:51 GMT

Press 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

Joe last few weeks Feb 18th 2008

Mon, 18 Feb 2008 22:56:37 GMT

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 Joe

Mon, 18 Feb 2008 22:06:41 GMT

Newquay 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

Joe makes Cornish Guardian Review of 2007

Fri, 04 Jan 2008 16:09:35 GMT

Joe makes Cornish Guardian Review of 2007

Joe hits the Ice at Eden

Wed, 26 Dec 2007 07:26:24 GMT

Joe, 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.

Joe back home

Wed, 19 Dec 2007 18:41:08 GMT

Joe 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.

Joe went into hospital today

Thu, 06 Dec 2007 22:38:09 GMT

Back 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)

Joes back at Home

Sun, 02 Dec 2007 22:43:16 GMT

He 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.

Joe is back in Hospital

Mon, 26 Nov 2007 19:03:59 GMT

Joe 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.

Joes halloween and fire work night

Mon, 05 Nov 2007 22:35:40 GMT

Joe 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

Mon, 05 Nov 2007 22:22:57 GMT

|Print Story| |Close Window|

WELL DONE: NEWQUAY PUPILS RAISE £125 TO HELP JOE

Date : 31.10.07

Hundreds of children swapped their school uniform for fancy dress to raise money for miracle-boy Joe Way.For a small fee, pupils at Bishops' School, on Treninnick Hill in Newquay, came dressed as their favourite Roald Dahl character. All the money raised went to help Joe, a four-year-old born with a rare chromosome disorder, Angelman's Syndrome, who last year developed another condition, Stephen Johnson's Syndrome, and suffered major organ failure.

He has battled against the odds in hospital, even fighting off a host of 'superbug' viruses, to recover enough to go home to be with his parents.

Joe was even well enough to go to Bishops' School at the end of the day of fund-raising, on Friday, to pick up a cheque for the £125 raised by pupils.

Sharon Bragg, chairman of the parent council, said: "Joe's sister Megan goes to the school, and Joe himself would've come here if he'd been well enough. As such, all the pupils know him well and they have a lot of familiarity with the cause they are raising money for. They were all really enthusiastic to raise the money, and the Roald Dahl theme fits with our book week."

Joe's mum, Claire, said she hoped to use the money to buy a toy to help him communicate.

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JOE, 4, HAS BEATS THE ODDS - AGAIN Western Morning News

Wed, 19 Sep 2007 17:07:04 GMT

JOE, 4, HAS BEATS THE ODDS - AGAIN

11:00 - 18 September 2007

For his fourth birthday, Joe Way was able to blow out the candles on his cake like any other youngster. But unlike most children, the plucky child has spent the last year and a half fighting off 12 different superbugs.

He has never spent more than four weeks away from hospital and his birthday this year was the first one he had spent at home for two years.

It is all the more remarkable given he has just spent another five weeks in the High Dependency Unit at Truro's Royal Cornwall Hospital with pneumonia and MRSA.

Joe was born with the rare condition Angelmans Syndrome, a chromosome disorder that causes severe learning difficulties. Last year he nearly died after developing Steven Johnson Syndrome, which caused major organ failure.

His proud parents Matt and Claire say their little miracle boy has beaten the odds once more. "For the first time in two years Joe spent his birthday out of hospital and has enjoyed the great weather as well as trips out locally," said Matt.

"We had family over on his birthday and have been to local beaches as well as Sennen Cove which made a nice change from Sennen Ward at The Royal Cornwall Hospital where Joe is often admitted.

"He has had a great week and we have taken him into the sea and in a swimming pool with his oxygen as we are determined he will still do the things he enjoys."

The family live at Newquay, where the community has raised more than £13,000 for little Joe. He has a specially converted vehicle, which was part funded by donations from customers at The Farmers Arms in St Columb Minor.

But the youngster is still desperately sick and must wear a mask at night to makes sure he breathes in enough oxygen.

Photo Album: news paper articles

Sun, 23 Dec 2007 08:03:48 GMT

news paper articles

Joes first Artical about his condition April 2005

handing over the £6200 we raised for HDU Jan 2007

parking protest with the hospital

Assert artical

Megan opens school room at the hospital

fund raising from Portsmouth

Joes HDU story Cornish Guradian

Portsmouth News story

Portsmouth parrish story p1

Portsmouth parrish story p2 ,3

More Photos...

Photo Album: joe going through Steven Johnson Syndrome. WARNING VERY GRAPHIC PHOTOS

Sun, 02 Dec 2007 00:22:04 GMT

joe going through Steven Johnson Syndrome. WARNING VERY GRAPHIC PHOTOS

the first signs of Steven Johnson Syndrome SJS

SJS as it started to get worse

SJS at its worse

SJS as it started to get worse

After SJS septic shock & organ failure Bristal PICU

More Photos...

Custom List: Websites we use

Sat, 23 Jun 2007 23:21:18 GMT

Websites we use

The "Ashley Treatment"
The story of a brave girl whose parents have sparked a debate which could be very relevent to our choices in the future.
Angelman Syndrome Foundation USA
The Angelman Syndrome Foundation
Stevens Johnson Syndrome Foundation
The Stevens Johnson Syndrome Foundation
ASSERT
Support and information group
Sensory Company
Where we got Joes projector from
special needs pushchairs
where we got Joes buggy from
Fact list of for Angelmans syndrome
A.S is often hard to spot
Where to stay when your child has a long stay in hospital
"The need for the services RMHC provides is enormous. When a child is admitted to hospital the family can find the time pressures and cost of travelling to and from the hospital, puts a huge strain on family relationships. RMHC helps to support families t
South west news joes story
Joes information for the media
The SUN artical
Not why we did this artical but it does have info on SB
Daily Mail story about Joe
Boy, 3, who fought off ten superbugs By IAN DRURY
Artical on fund raising for Joe
Newquay voice
Facts about angelmans syndrome
Information for research or artical writing
Invasive Enterobacter sakazakii Disease in Infants
Information on one of Joes rarer super bugs
Pseudomonas aeruginosa Joe has had this bug four times
Research information
THE CARE AND FEEDING OF AN ANGEL
by Carol Mallory mother of an Angel
Holiday at a Park where Joe lives
We have had already been visited by 4 angelman children
SKY news Joes story
Super bug story picked up by SKY
kaiserchiefs
Joes happy music for hard and good times

Joe Way and his story

joes new web page

Press Release

The 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 conditions

We 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 inspired

Portsmouth The News (News paper)

The brave face of courage of little Joe

Cornish Guardian

BALLOONS FILL SKY IN TOUCHING FAREWELL TO 'MIRACLE BOY' JOE

A poem we always thought helped

Joseph-Luc Way sadly passed away on Wednesday 7th May 2008

Fund raising for one of Joes causes

Joes brother Finn Piran Way arrived

Cornish guardian March 2008

Joe gives £3000 to the Ronald McDonald House Bristol

Joe last few weeks Feb 18th 2008

Newquay Lions help Joe

Joe makes Cornish Guardian Review of 2007

Joe hits the Ice at Eden

Joe back home

Joe went into hospital today

Joes back at Home

Joe is back in Hospital

Joes halloween and fire work night

WELL DONE: NEWQUAY PUPILS RAISE £125 TO HELP JOE

JOE, 4, HAS BEATS THE ODDS - AGAIN Western Morning News

JOE, 4, HAS BEATS THE ODDS - AGAIN

Photo Album: news paper articles

Photo Album: joe going through Steven Johnson Syndrome. WARNING VERY GRAPHIC PHOTOS

Custom List: Websites we use

The website is going live on Wednesday 4^th June four weeks to the day that 4 year old Joe Way died.