Mark Rymer

Lily-Ann Little Heart Heroine

Fundraising for CHUF
£5,052
raised of £10,000 target
by 93 supporters
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CHUF

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RCN 1160831
We Support heart heroes and their families to enable them to reach full potential

Story

On the 21 September 2012 at 12:06 Lily-Ann came into the world weighing 7lbs 7ozs, but sadly her breathing had been noticed to be unusual as she struggled to breath, she was then quickly placed on life support.
Once Lily-Ann's breathing issue had been assessed the medical team were unequipped to provide her with the care she requied thus makin a quick crucial decision to transfer her to the Royal Victoria Infirmary Hospital, Newcastle, by fast response.
On arrival Lily-Ann was quickly settled on life support so the professionals could re-evaluate her condirion and upon doing so they discovered why her breathing was strained.
After the initial assessment the medical staff identified the right side of her nasal airway was blocked by a large membrane and her life side was severely narrow therefore requiring immediate surgery to rectify the issues found.
When she had turned 2 days old she underwent her first operation, which unfortunately didn't cure the issue, so at 5 days old a second operation had been carried out to help clear the airway.
After surgery she received on her nose Lily-Ann still had breathing issues!
It was down to the attention and care from the staff that had noticed the issue was a cardiac concern.
On discovery a cardiologist arrived from the children’s heart unit located in the Freeman Hospital, Newcastle, to assess Lily-Ann's condition.
Once Lily-Ann had further checks her mother and I were hit with terrifying news.​


Lily-Ann had been diagnosed with a Congenital Heart Defect.​


She occurred 6 issues with her heart giving her mum and I a shock of a life time thinking our only child could die.​
She suffered with the following issues:​
-       Coarctation of aorta​
-      2 Ventricular Septal Defect​'s
-      Double Outlet Right Ventricle (DORV)​
-      Transposition Of The Great Arteries​
-      3 Heart Murmurs​
-      a leak in her aortic valve​
On discovering her cardiac issues she was transported to another Hospital at 6 days old by fast response where she had further surgery.​
We feared the worse for our daughter knowing she had major heart surgery to come.​
The surgeon explained she had a very rare condition with there been only 19 cases logged in the whole of the UK and not all were successful operations.  It instantly scared the hell out of us as her parents thinking our only child could potentially die from her heart operations. We asked and pleaded to everyone we knew to pray for our daughter to survive the open heart operation which could only save her life.​
Having had two operations and feeling very weak, her mother and I felt she was not strong enough to survive, but after her first heart operation which lasted 9 hours my daughter pulled through and showed to be stable on the life support machine.  Further to that she underwent the biggest operation to correct the arteries, patched up the 2 holes in the heart (Ventricular Septal Defect​) and to re-position the ventricles a few days later.  Her stability on the life support showed to be decreasing so the doctors needed to act fast to carry out the life saving operation.

As the days went by we learnt we were very lucky to be blessed with such a strong baby.

We were lucky enough to have Lily-ann home for five months before learning she needed further intervention for a narrowed pulmonary artery. Which unfortunately was unsuccessful which led to further heart surgery and an homograft replacement. 

Lily-Ann bounced back from her risky heart operations but sadly other families suffered a tragic loss of their child.​

Lily-ann is currently doing very well, however she still has 3 heart murmurs, 2 leaking valves and she will need another homograft replacement later on in her life.

So we urge you, please make a donation to help heart defected children survive and be able to live a happy and fulfilled life.​
All donation raised will help to go towards medical equipment to save innocent little lives.​
Thank you in advanced.

About the charity

CHUF

Verified by JustGiving

RCN 1160831
Chuf's mission is to make life better for children and young people who are born with or who develop heart conditions by providing lifelong support to them and their families. Chuf supports children who receive treatment at Freeman Hospital and many other hospitals throughout the North of England.

Donation summary

Total raised
£5,051.03
+ £690.68 Gift Aid
Online donations
£3,326.03
Offline donations
£1,725.00

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