It has taken me a lot of courage to do this and it would mean the absolute world to me if you could spare a few minutes to read and donate to our chosen charity ‘Tiny Tickers’ where possible. No matter how big or small, it could make a huge impact.

After a very difficult and worrying pregnancy, on the 24th of September 2021, we welcomed our beautiful little girl Alara into the world.

She had all her checks and was discharged from the hospital with no health concerns.

Within the first six months, she was often ill with what we thought was common coughs and colds etc, but every time she was unwell it was some kind of infection that she just couldn’t fight off and ended up needing extra care / medication to help her get better, and no matter how many times I raised concerns about her I was just made to feel like I was over worrying. Compared to my other two children she was very small at birth, and was a very unsettled baby and cried a lot which we later knew was from discomfort.

During this time we noticed a few differences with Alara and after spending her first year in and out of hospital attending different appointments, one thing lead to another and she was soon diagnosed with several different rare conditions/ syndromes. We already knew it was going to be a long journey and heartbreakingly, Alara would only have a short life expectancy.

During one of her chest X-rays which was done under orthopaedics where they was actually focusing on Alaras bones and spine, one of the paediatricians incidentally noticed a shadow on Alaras lungs so referred her on to LGI for some further tests. It just kept getting worse, it felt like we was living a nightmare and I just wondered when it was ever going to end.

We was just processing all the different things going on with our precious little girl and hoped in time it would get easier to accept, but suddenly our life was turned upside down when sadly Alara was diagnosed with a rare congenital lung condition caused by incomplete development of the lungs, and also a rare congenital heart defect called scimitar syndrome, which she will soon this year be having her first major surgery to hopefully repair her heart.

We are not sure what to expect for the future and are just taking each day at a time and tackling anything that comes in our way, but what we do know is we are very lucky to have been given a chance to help our little girl live a happy and hopefully healthy life considering all the struggles, but sadly some babies don’t get this chance. No health conditions or heart defects were detected during pregnancy (despite several scans) or when she was born and if it wasn’t for me literally begging specialists to carry out tests on our little girl, who knows how different things could have been.

Before Alara, I had never heard of or knew CHD existed, but with our experience, and for our brave little heart warrior, This is my chance to educate, raise awareness and raise as much money as I can to help babies and families out there fighting a CHD.

Tiny Tickers is the only national charity dedicated to improving the early detection rate of congenital heart defects in babies - during pregnancy and soon after birth.

A baby is born with a serious heart

condition every 2 hours in the UK and

despite congenital heart disease (CHD)

being one of the biggest killers of infants in

the UK, less than half of these conditions

are picked up during pregnancy.

That means over 1,000 newborns leave

hospital in the UK every year with no-one

realising they have a potentially life-threatening

heart condition. These babies will often fall into

the early stages of heart failure, significantly

impacting their long-term quality of life. Some

will die before anyone even realises they have

a poorly heart. By fundraising for Tiny Tickers you are giving these babies a better start in life and helping families through the hardest time of their lives.

£10 could provide a sonography department with a Tiny Tickers situs doll to help diagnose heart conditions during routine scans

£70 trains one sonographer to be better able to detect heart conditions during routine pregnancy scans, giving that baby’s

heart the best chance of beating their condition

£100 could pay for a professional facilitator to run a virtual peer support group, offering heart parents an opportunity to speak to

others going through, or who have been through, a similar situation

£750 could provide three handheld pulse oximetry machines for use in maternity units to help detect heart conditions in newborn babies

before they leave hospital

Tiny tickers have answered so many questions and educated me on so many things no body else could, and made me feel so comforted at the loneliest time of my life. It’s the first place on our little heart journey we have actually felt understood and not alone.

Please help us on our journey. your donation, no matter how small, can create a significant impact and would really mean the world to us.

Thank you so much in advance,

Jessica, Alara’s mummy x