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

The brave face of courage of little Joe

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

Joe Way

 

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

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.

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

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.

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.

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)

Newquay boy Joe Way celebrates his fourth birthday.

After spending another five weeks in HDU at Treliske with pneumonia and MRSA Joe defies the odds again.

The little fighter's CRP has come down with the help of three antibiotics and round the clock care from nursing staff.

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.

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.

We have made good use of his converted vehicle which was part funded by The Farmers Arms in St Columb Minor Newquay

He now has Bi PAP which is a mask that is attached to ventilator which helps him breath at night as his lungs have been damaged further and When Joe is asleep he only triggers a tiny percent of his lung capacity which is maybe why he wakes up so much at night, he has been better in himself since having this.

For the first time since SJS over a year ago he has no lines in him for taking bloods so we hope this will be a start of a superbugs free period after fighting off over 12 different killer bugs in twelve months.

Let’s see if he can beat his record of four weeks at home big thanks as always to the medical staff for looking after him.

Joe who was born with Angelmans Syndrome has spent most of the last 18 months in hospital and nearly died last summer after having Steven Johnson Syndrome which lead to complete organ failure he has inspired over £13k worth of fund raising in the last year and has his own blog page which other parents and researchers can use http://joe-angelmans.spaces.live.com

What is MRSA?
MRSA stands for Methicillin-resistant Staphylococcus aureus. The term is used to describe a number of strains of the bacteria, Staphylococcus aureus, that are resistant to a number of antibiotics, including Methicillin.
Staphylococcus aureus is a group of bacteria that live on the surface of people's skin and inside the nose. It is normally harmless. Most people who are carrying it are totally unaware that they have it. In fact, it is thought that up to 30% of the general UK population carries these bacteria in their nose or on their skin.

Contact

Claire Way 01637 877451

Farmhouse

Hendra Holiday Park

Newquay

TR8 4NY 

He has beaten yet another superbug MRSA.

Joe came back home last Saturday after 5 weeks back in HDU he had his port removed and a long line put in his leg.

The long line was removed before we came home as it would not bleed back and he now has Bi Pap which is a mask that is attached to ventilator which helps him breath at night.

When Joe is asleep he only triggers 1% of his lung capacity which maybe why he wakes up so much at night, he has been better in himself since having this.

For the first time since SJS over a year ago he has no lines in him for taking bloods and although he had bloods done today we hope this will be a start of a bug free period.

Lets see if he can beat his record of four weeks at home big thanks as always to the staff for looking after him as they have been busy with lots of holiday makers.

Megan had her Birthday at Hendra with her friend Amber and Joe had an Angelmans friend called Elisha to represent him

What are viruses, and what are bacteria?
A virus is a poison and the term is applied to a group of infective agents which are so small they are able to pass through the pores of collodian filters. They are responsible for some of the most important diseases affecting mankind, e.g. influenza, poliomyelitis, smallpox and yellow fever. A virus is normally not treatable with antibiotics. Viruses are transmitted both by physical contact as well as through the air. They are normally invisible.

Bacteria is equivalent to terms such as germs, microbes and micro-organisms. They are larger in structure than viruses and usually are visible microscopically. They can be treated by antibiotics except when they have become resistant to such treatment, as is the case of Staphylococcus aureus (MRSA). Bacteria can also be transmitted through the air.

 What are the effects of MRSA?
MRSA may invade the blood and cause potentially serious complications such as bacteremia, septic shock, and serious metastatic infections (endocarditis, pneumonia, osteomyelitis, and arthritis). In more vulnerable people, Staphylococcus aureus bacteria have been known to cause boils, abscesses, impetigo, septic wounds, heart-valve problems and toxic shock syndrome. In extreme cases, it can result in death.

How much of a problem is MRSA?
MRSA was first reported in the UK and Europe in the 1960’s and in the USA in 1968. In the UK it is estimated that at least 100,000 hospital acquired infections occur each year. MRSA accounts for 52.3% of S. aureus nosocomial infections in USA, is now endemic in many hospitals, and is one of the leading causes of nosocomial pneumonia and surgical site infection and the second leading cause of nosocomial blood stream infections. MRSA in particular has become a major problem in many UK hospitals. An MRSA support group said that the UK Government's tally of 5,000 deaths a year comes from statistics compiled in 1994. Their analysis of statistics from official bodies suggests that the real number of annual deaths is closer to 20,000.

What is being done to combat MRSA?
Re-training of hospital cleaning staff, tighter cleaning and disinfection policies, the appointment of a “Super-Nurse” by the UK Government and general hygiene awareness programmes are the main tools for combating the spread of MRSA in UK hospitals.

What is the current estimated cost to the NHS due to MRSA related infections?
Estimated costs to the NHS of hospital acquired infections run at approximately £1 billion. In the USA in 1999, MRSA treatment costs were estimated to be 6-10% more than treating an MSSA infection (resulting from the increased cost of vancomycin use and costly isolation procedures), and that the attributable death rate of MRSA was 21% as compared to 8% in MSSA.

 He missed his sisters sports day again see pic of Meg not running but organising everyone...He still keeps giving a smile so fingers crossed.