Hi! My name is Adam and I arrived into this world on Monday 28th July 2014.

My Mummy and Daddy found out all about me when they came for their second scan at 20 weeks. They were referred to Dr Barwick at Leeds General Infirmary and found out I had a very rare heart condition called Truncus Arteriosus and Ventricular Septal Defect. This condition affects less than 5 in every 100,000 babies and means that my heart looked like a Y and instead of having an aorta and pulmonary artery I only had one common trunk. This meant that all my blood, red and blue would mix about, instead of flowing through my body properly.

I managed to go home for ten days but on August 12th 2014 I really couldn't manage anymore. I tried so hard to have my milk and Mummy and Daddy were so patient feeding me little bits whenever I could manage but I slept about 20hrs a day. I went onto the amazing ward 51 at LGI for them to take care of me. I met so many wonderful people including the incredible Mr Jaber who was to save my life......

On August 21st 2014 I went to sleep in Daddy's arms and Mr Jaber spent 7 1/2 hours repairing my broken heart! Afterwards I spend time in PICU and then straight onto the ward as I was doing so well. I was due to go home on Friday but my wound was open a little and Mr Jaber wanted me to stay over the weekend. 

On Saturday, I became very poorly, very quickly and was rushed back to HDU in the middle of the night. In the morning Dr Barwick told Mummy and Daddy that I had develope d a dangerous tachycardia where my heart rate was 222 and an Atrial Flutter. They took me back to PICU to try to stop my heart and restart it. This didn't work first time and I ended up having four of these. Mummy and Daddy have told me how very frightening this was for them. 

After 32 days I was finally allowed home to be with Mummy, Daddy and my big sister Aimee. 

On Monday morning, having been home only 36 hours, I didn't feel so well and was finding breathing a little hard. I took Aimee to school, she was so excited for everyone to meet me and I felt like a celebrity! Mummy and Daddy, after speaking to the special heart nurse took me to LGI A&E , within two hours my little body shut down and I had a respiratory collapse, rushed back to PICU on a ventilator. 

Finally towards the end of September I finally made it home. A couple of blips along the way, several very fast rides by ambulance with bronchiolitis and croup , but for now, I'm doing well, meeting my milestones and loving my second chance at life. 

I'm now nearly two and at my last appointment,  my cardiologist discussed with Mummy and Daddy the need for another open heart surgery this year. 

We will be forever indebted to Mr Jaber, Dr Barwick and all the staff of ward 51, PICU and The Children's Heart Surgery Fund.

CHSF provide help in many ways. They fund vital equipment, provide staff, play equipment and furnishings. They have accommodation for parents so you are always only a few minutes away from your child,  give financial support for families who are long term stay and generally support the staff and families in caring for critically ill children .

As many people know,  there was a lot of media coverage in recent years into the heart units of the UK. A set of 200 standards have been drawn up that every unit needs to reach.  One of the largest, most expensive of these standards,  is to build a hybrid theatre. The "Keeping the Beat"  campaign was officially launched in May 20th 2016. CHSF have already committed £1.25 million to this campaign,  now there is a need to raise a further £500,000 to make this theatre a reality. 

My many family and friends have decided that we want to raise £20,000 and will undertake many different forms of fundraising... If you would like to help, join in or simply donate every single thing really does help raise awareness and funds.....

Thank you for taking the time to read my story.

Lots of love, hugs and kisses xxxxx

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