Heart Warriors

It is with a very sad heart that I write this post.
As I write this I am not sure of the outcome, but I am hoping it isn't the worst. As many times we have done before, I am praying for a miracle.
Throughout the journey of a heart transplant for a child, you form friendships, a support circle, and bonds with others on the same journey as yourself. This not only helps you, but helps everyone around you.
The tail end of this support, newly formed friendships and bonds is that you ride your own roller coaster, but you also board theirs. You ride the waves of relief and good news, but you also battle the undercurrents of bad news, long recoveries and sometimes death.
There is just one thing on my mind when it comes to this. WHY?
Why? is the Transplant list so long?
WHY? have the government not changed the infant rules BEFORE?
Why? does this have to happen to the ones you love?
and most importantly WHY is everyone not on the list?
So with the questions unanswered we will have to answer them ourselves?
An Army of Heart Mums, Dads, Sisters and Brothers, Aunties and Uncles.
An Army of Doctors, Nurses, Play specialists.
An Army fighting for one thing. One Outcome. One life does not have to end for nothing when it can start 7 more.

Please, if you read this, and have not already signed your organ donation register, wherever you are in the world. Become a hero today and sign it.
And if you have Facebook, or twitter, share this blog, and you might convince one person to sign the register but you will have saved another 7 lives too :)
Charleigh Jayne's Berlin Heart Fund

What does Organ Donation Mean to you?

What does Organ Donation mean to you?

Unless you have been directly effected by the need for a donor organ, its not on the top of the to do list.
You never imagine, the long wait, the nerves, the stress, that call.

Once upon a time, there was this beautiful little princess, she was on day 254 of a Berlin heart, waiting for her call.
At 4am THAT call came, but some people are not that lucky, and should it be down to luck?

Why?
Why should you, or your loved one have to face every day waiting for death on the list?
Why should you have to wait?
Why cant there be an opt out service?
Why are there not enough to make a difference?

Why? Selfishness, perhaps, ignorance maybe. Lack of understanding, DEFINATLEY.

There is never a good time to discuss death and organ donation with young children, but what happens when a young child needs a donor organ?

When is it ok to loose a loved one? When is it ok to give a gift of life?

Last years statistics, they don't look too bad, but translate them into waiting lists, and funerals.

What cost do we have pay to get the Opt out system

Just going to leave you with this...


What would YOU do, if YOU were waiting for an organ?

Be A Hero, Save a life.
www.http://www.organdonation.nhs.uk/

Urban Treasure Hunt Milton Keynes

So what is it? 

We have hidden 2 #chick stones across Milton Keynes.  They are accompanied with an envelope with instructions. 

You will receive 1 photo and 3 clues on where to find the stones on Charleighs page. 

Go and check them out find them then follow the instructions. 

Love all at the CJBHF team xxx

Our Mission #chick

Charleigh Jayne Berlin Heart Fund

This fund has been set up to raise money for families with children on the Berlin Heart. The Berlin Heart is a mechanical pumping unit which sustains the life of those waiting for a transplant; it is often referred to as a bridge to transplant, and patients on these devices would not survive without them.

Children on the Berlin Heart often spend months at a time in hospital, the current record is 273 days on this device, this does not include time before the Berlin Heart was chosen as a means to ensure their survival, or the period in which the child recovers from their transplant.

For the families of these children it means that they are separated for extended periods of time from their immediate family members. Usually accommodation at hospital is only for one parent, some children have to travel hundreds of miles for this treatment as currently the Berlin Heart is only available in 2 hospitals across the country. This can cause financial hardship for the family as often the second parent/carer will need to reduce working hours or give up working altogether to care for other siblings, the parent staying continuously at the child’s bedside is also unable to work. No parent should have to worry about their bank account and bills whilst their child faces life or death.

The Charleigh Jayne Berlin Heart Fund aims to provide financial help to the families of those children, by helping with travel costs, utility arrears accrued whilst a child is on the device, and help towards rent or mortgages and to support these families to budget with the rising costs of a long term stay in hospital.

Our ultimate aim is to raise enough money to provide accommodation so that all members of the child’s family can spend time together at weekends, birthdays, religious holidays, and so that the parent that is continuously at the child’s bedside can have members of their family be with them. It is a long and hard journey on the Berlin Heart; we believe that no person should be alone during this time.

The Charleigh Jayne Berlin Heart Fund will also promote the importance of organ donation and awareness of CHD at every possible opportunity.

#chick 

#organdonation

#CHD aware

Update

Today is 10th March 2014.

So Charleigh's charity is being born, and from the depths of pain and loss, a legacy will arise.

Follow the story of Charleigh Jayne's Berlin heart Fund.

We promise to raise awareness for Organ Donation, and Congenital heart defects (CHD) by hash Tagging Chick wherever we can. 
We will raise funds to make life more comfortable for families with children on the Berlin Heart machine, in The Freeman hospital and Great Ormand Street hospital.

Any one is welcome to raise funds for Charleigh Jayne's Berlin heart Fund and you can contact one of the administration team by in boxing them on the facebook page, or emailing cjberlinheartfund@outlook.com


We thank those who have supported us from the start, that share our journey as we begin, and those who will come in time, to make this a new dawn.

Love CJ's Berlin Heart Fund Team xxx

#chick on Facebook and Twitter?

#chick (click chick to see more)

What is this #chick all over Facebook you ask?

Well here is her story in short; 

Charleigh Jayne Thomson 7.5.10 -16.2.14 Light of our lives.

Christina Thomson, gave birth to 3lb 4oz Charleigh On 7^th May 2010.

After a difficult pregnancy, the bay was expected to be low birthweight.

But immediately after delivery there was an added shock - Charleigh’s tiny heart was not working properly.

She had a hole in the heart and her pulmonary valve is blocked, which means the heart cannot pump the blood around her body.

Charleigh was rushed to the neonatal unit, where doctors gave her drugs through a line in her arm to force the heart to pump.

Without that she would have died there is no doubt that the unit saved #chick’s life.

Charleigh was then moved to Great Ormond Street for an operation to repair her damaged heart.

Charleigh was one of 350 lives saved every year at the unit, which urgently needs more cots and more equipment.

After her first heart repair she was sent home well, and with another operation to follow as she got bigger.

Charleigh Thomson was then left fighting for her life after the operation to fix her seriously defective heart went sadly wrong.

Doctors in Great Ormond Street Hospital were pulling out all the stops to make 19 month old chick survive long enough for a donor heart to be found.

She was just so poorly. The doctors were fantastic and they done everything they possibly could. But Charleigh’s only hope was an urgent heart transplant.

She needed a new heart as soon as possible, but had to wait until one was found and watched her fading away while they waited.

Doctors  adjusted the medication keeping Charleigh alive and decided whether she would be strong enough for a stopgap solution, a mechanical Berlin heart.

The problem was that the operation to give her a Berlin heart was even more complicated than transplanting a human heart. The risks of the surgery, because Charleigh was so ill, were horribly high.

At the last minute the Berlin heart was attached to Charleigh, with hopes of a transplant to come.

Charleigh stayed hospital bound for 255 days on the Berlin Heart waiting for a Transplant.

But it would not last forever; she needed a new heart fast before her heath failed.

Charleigh was awarded MK prides Bravery award for her fight for life and captured the heart of everyone who heard her story and they fell instantly in love with her when they saw her smile.

She even captured the heart of Milton Keynes’ Olympic gold medallist Greg Rutherford, who made a special trip to Great Ormond Street to visit the sick children. #chick had a special smile just for him.

Finally, in the early hours of the morning on August 23^rd 2012 the, came then call every one had been waiting for.

After a tough recovery Charleigh was allowed home, no machines, no mechanical heart. A normal (ish) life at last.

Charleigh suffered some rejection and came through this but suddenly during a second bout of rejection grew her angel wings on February 16^th 2014.

She is missed by all and loved by all, and will leave a lasting imprint on this world.

Do your bit to help raise awareness for CHD (congenital Heart Defects) and Organ donation, which blessed Charleigh with another full year and 9 months with her family.

Light of our lives, help save a life, or seven!

Sign the Organ donation register, you may need one, one day.

Help raise awareness by posting a public facebook status hashtaging chick #chick

Post #chick on twitter

Follow her fund'a progress on Facebook. 

Search for Charleigh Jaynes Berlin Heart Fund page.

R <3 I <3 P Princess Your Memory WILL Live on! I promise!!