Such Tragic News

So not only have I lost my dear cousin at the start of 2013 due to not receiving his heart transplant but today I found out that a very good childhood school friend is now on the transplant list needing his gift of a lung transplant. Jon Hardy has battled his whole life fighting a condition called Cystic Fibrosis (CF) which is a genetic condition in which the lungs and digestive system become clogged with thick sticky mucus. Jon's life so far has constantly consisted of endless trips in and out of hospital, bronchodilators , antibiotics and physiotherapy. If you know anyone with this condition your know exactly how limiting this awful condition is! There is NO treatment as such, the only real effective treatment is a lung transplant which even then, if successful continues with a life of endless medication! However they have been given a second chance, a HERO who SIGNED UP to the organ donor register will be able to provide my friend, and others, with a second chance! Just remember part of you will always live on, and to many, your be known and remembered as a true, noble HERO!

2013 truly has been an awful year, please if you haven't already done so, PLEASE sign up to the Organ Donor Register!

Many admit that they don't like thinking about the end of their life, and that signing up to the organ donor register is a devastating matter to consider. However put yourself in the shoes of a person requiring a transplant - wouldn't you wish and hope that an organ becomes available for you? Considering what happens at the end of your life shouldn't be a scary matter, by signing up your make such a difference and can save up to 9 lives! WOW! Also take into consideration that the feeling you have when considering signing up to the donor register will not be remotely close to the feelings of those requiring a transplant. They are aware that their life may be cut short, imagine the fear they must be feeling. YOU can do something about this! There are over 7500 people requiring a transplant, of these, almost 1000 pass away every year because they have not received their gift! PLEASE help change this!

"I'll sign up tomorrow" Tomorrow could be too late! Act now! Save Lives!

First Memorial Gift Ordered Via The Newly Establised Charity (My Butterfly Family)

The newly established charity in memory of my cousin, (My Butterfly Family) has finally commenced and we have been able to order the very first memorial gift for a very special young lady. Thank you just isn't enough to every one who has kindly helped achieve this.

If you would like to know more about this charity please visit: www.mybutterflyfamily.weebly.com

If you would like to donate to the charity please do so via PayPal: mybutterflyfamily@gmail.com

Once again, thank you!

Time for BIGGER changes

So I have now come up with a fantastic new idea and through research I feel this has the potential to be a HUGE success. With the given situation regarding my dear cousin, this has opened my eyes into the suffering his children have gone through in accepting that their father has passed away. Prior to this, they had to accept he was living in hospital and had limited chances to visit him. Putting this all together I have taken on the challenge of setting up my own charity. It will be aimed at families who have lost a loved one whether it be a child loosing a parent or a parent loosing a child due to not receiving a much needed organ transplant. This being due to research and discovering there are limited sources to help children and parents who have lost a loved one due to organ failure and personally feeling that after witnessing such a traumatic experience, both children and parents need support, to know there are others in a similar situation and to be offered a day in which revolves around them. Being fully aware that there are many families within the UK in a similar situation there will be a selection process of children or parents who are nominated to the charity. The charity itself will rely purely on generous donations from the public so please understand that it may be a slow process at present.

Each successful nominated family will receive a beautiful memorial gift of their loved one and then be offered a day which is purely revolved around the person/s nominated. This is aimed to help with the bereavement process and to show those affected that although their loved one has gone, continuing with their life does not mean they have forgotten, they are learning how to cope without their loved one. Through research it became clear that many would appreciate a memorial item which they can look at everyday, knowing they are supported but most importantly this will help with the bereavement process. Many also agreed that a day revolving around the nominated person would help, particularly children, in accepting and to provide positive emotions.

The main aim of the charity is to 'buddy' up local families who are experiencing similar situations aiming to provided much needed support and to be able to answer any questions. There is no better advice than what comes from a person who has experienced the same.

I fully understand this may be a slow process in starting up this charity, so please bare with us, however through research I need to achieve £5,000 a year to be able to set up and register this charity officially. Because of this small set back, I have set up a pay pal account in which donations can be sent to and already planning future promotional events aiming to help achieve and progress this target.

If you would like to make a donation towards this charity please send via PayPal to: mybutterflyfamily@gmail.com  Any amount will be gratefully received. And please remember that your be helping both children and parents who have experienced such a traumatic event which no one should have to experience.

 

Thank you in advance.

My own Epetition - organ donation needs more coverage on TV & schools

Looking through the Epetition website, I am amazed to see that many regarding organ donation haven't managed to receive the 100,000 signatures needed to be debated in the House of Commons. Well its about to change, I have started up an Epetition for 1 year which states that organ donation needs more coverage on TV and secondary schools. From the heart" a TV campaign managed a total close to 147,000 people signed to the donor register throughout the week of the campaign. Imagine the number of potential registered donors with regular TV promotion. As for secondary schools, well through personal contact with the Department of Education, it became clear that awareness may be raised during PSHE lessons to which the school decided whether or not to discuss the topic. I personally went into a local school and performed a presentation the feedback I received was fantastic and many had questions and voiced concerns they had. Many pupils also reported that they will go home and discuss organ donation with their parents. I feel this was a huge success, and it is clear many young people have unanswered questions regarding organ donation which need to be answered.

Lets achieve the much needed 100,000 signatures and make a start on raising awareness in my cousins memory!

 

TO SIGN THE EPETITION PLEASE GO TO: http://epetitions.direct.gov.uk/petitions/54567 

(Another) PETITION: Free Prescriptions for Organ Transplant Recipients

For those fortunate enough to receive an organ, I agree strongly with this petition! they should receive free prescriptions. Receiving an organ does not happen by choice and it is a real life changing situation and experience, so why should they have to pay for medication which is essential for them? People who take drugs don't have to pay for their methadone, so why should those who HAVE to have medication because of an illness which occurred not through choice. As a nurse I fully understand there are many reasons why people may turn to drugs so please do not feel I am discriminating against people as I am not, far from it. As many of you may have gathered by now, organ donation and all aspects around this topic are very close to my heart and there is a lot of change required around this.

If you also agree that people who receive an organ should not have to pay for their medication  then please sign the petition below! Thank you in advance.

LINK: http://epetitions.direct.gov.uk/petitions/54439

Organ Donation: Switch to an Opt-Out System

Report by the BBC: A change in the law to bring in an opt-out organ donation system has been overwhelmingly voted through by Welsh assembly members.

Wales will become the first UK country to adopt a process where individuals will be presumed to have consented for their organs to be donated unless they opt out.

If Wales can achieve this, then why cant England? It doesn't take much to consider the amount of lives which could be saved if everyone was signed to the organ donor register. This is a topic I feel very strongly about! Too many people will happily take an organ if they required one but many wont sign to the organ donor register - WHY? yes it is fearful to consider the end of your life however, for me, I feel great knowing I may save another innocent persons life when mine is over.

Please if you feel strongly that the England should switch to the opt-out system, please sign this petition! thank you in advance.

LINK: http://epetitions.direct.gov.uk/petitions/38220

Family Fun Day in Memory of Jay for Harefield Hospital

On the 3rd August 2013 I organised a family fun day aimed to raise funds for the transplant unit at Harefield hospital where my cousin spent his final few months. I had been organising this event since the beginning of 2013, and worked really hard to ensure I had plenty for families to do.
 Stalls included:

• baby competition
• baby stall
• bouncy castle
• hook a duck
• hoopla
• refreshments
• bric a brac
• cake stall
• guess the weight of the cake
• how many sweets in the jar
• displays - army cadets and dancers
• clairvoyant
• teddy tombola
• book and DVD stall
• grand raffle
• candyfloss
• And others but most importantly an Organ donation stall.

It was a fantastic day and a great turn out! Thank you isn't enough to all those who helped out on the day! My first event I have ever organised by myself turned out to be very stressful however hasn't put me off! Bigger things will be happening all in memory of my cousin and aimed to raise more money so other families do not have to suffer what we or my cousin did.

 

**IN TOTAL OVER £700 WAS RAISED** I aim to spend this money on hair washing facilities for the transplant unit in hope to improve simple, living conditions.