Weʼve raised £1,183 to purchase a Automated External Defibrillator for Oliver who has Long QT Syndrome Type 1. This is a vital piece of equipment for his condition
- Newton Abbot, Devon, UK
- Funded on Thursday, 9th August 2018
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Oliver is a little boy currently 6.5 months old who lives in Newton Abbot.
He is such a character! At his young age he is full of personality, cheekiness and love. To look at he is your perfect normal baby and you'd never know he lives with a condition that could end his life in seconds. For this reason we are raising money for his own defibrillator.
Oliver was born with a condition called Long QT Syndrome- specifically type 1. It is an inherited genetic condition and his mum and granny also have the same condition. No one knew Oliver would have it until his mum Liane reached 32 weeks of pregnancy and she got diagnosed and there was 50/50 chance Oliver may of inherited the faulty gene. At just 2 days old he had his first ECG which showed suspected signs and then later genetic testing confirmed he carries the gene.
Long QT Syndrome is a rare disorder of the hearts electrical system that can lead to dangerous heart rhythms, fainting and sudden cardiac arrest. Type 1 delays the flow of potassium particles out of the heart muscle cells which affects the repolarisation of the heart after a heartbeat which causes an irregular heartbeat. This is shown on ECG as a lengthened QT Interval. The heartbeat is controlled by a series of electrical impulses, which are made by these moving charged particles of potassium and sodium across channels in the heart cell walls. For anyone with Long QT Syndrome these channels don't work properly. In plainer English the heart doesn't beat as it should and takes longer between each beat than a 'normal' person.
Due to the prolonging of the QT Oliver may at anytime his life experience a number of things such as fainting, arrhythmias or sudden death.
Oliver will take beta blocker medication for the rest of his life and whilst this isn't a cure (there is no cure) it will help to lessen the prolonged QT interval to create a more 'normal' heart rhythm but there is no guarantee. Oliver will have endless ECG's over his life and regular reviews.
Oliver could suffer a cardiac arrest by being startled e.g. woken up with a loud bang, shocked by someone jumping out at him even as a surprise, doing strenuous exercise or having to much stress.
Oliver can and will live a normal life and he proves this already. Everyone around him who provides some level of care for him is trained and knows how to perform CPR should the worst happen but THIS ISN'T ENOUGH. Ambulances now have an average response of 8 minutes........We have 2 minutes to restart our babies heart before the chances of him regaining life fade away. A defibrillator he could have at home, to take to his childminders, we could take on family days out just means that he has a stronger chance of survival should the worst ever happen. This is what I need help raising funds for.
We may never need it, and I pray to god we never do but I do not want to be that mum that sets up a foundation charity in memory of her child because she couldn't save hers. I will do everything I can to give Oliver the best life I can and ensure he can lead a normal life with the safety of knowing we have the equipment within arms length should we ever need it.
The AED we want to buy is literally 'dummy proof' it speaks to you and tells you where to place the pads and what to do, you cannot go wrong with it at all. The cost is £1100 because we would like not only to have paediatric pads but also adult pads. As his mum and granny both have the same condition and SADS is a reality for them too potentially. Though there are community defibrillators, our nearest is 1.6 miles away- a 7 minute drive or 35 minute walk- we do not even have 7 minutes to act.
Most parents worry about SIDS (sudden infant death) in the cot, we have to worry about it every second of the day for the rest of his life, it could be as simple as him playing on his playmat whilst I nip to the kitchen and make a cup of tea and he could have a cardiac arrest in those minutes i'm gone, that is the serious potential of this condition. I don't say this to frighten anyone or panic over oliver, in fact the opposite, all I want is for people to be aware of Olivers condition, if you can help us achieve the purchase of a defibrillator fantastic but more importantly I want those in his life to mean something in his life and bring meaning and memories to it. The fact is myself, my mum or oliver may not wake up tomorrow so everyday counts. That is why Oliver as someone told me 'does every baby group in the area' lol because I want him to have every chance of living just incase tomorrow doesn't come.
If you can even give 10p it all helps.
With love & thanks for your support and generosity
Liane & Richard (Olivers parents) and Oliver <3 xx
P.S We are aware defibrillators aren't recommended for use until 12 months of age which is why fundraising has started now so we have 6 months to reach our goal.
- 4 months ago
Liane Collins4 months ago
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Apr 20, 2018
A small donation from Holsworthy ACF - with best wishes and are spreading the word through our open/closed pages and a personal fan page.
Apr 20, 2018
Best of luck to you all.
Apr 17, 2018
I hope you’re all ok and this helps you towards your target x
Apr 17, 2018
Just a little, but hopefully it will help.
Carly & Harry Millman
Apr 17, 2018
Apr 17, 2018
Apr 16, 2018
Well done Liane on raising awareness of this campaign for our beautiful little grandson. Hopefully we’re getting closer to reaching the target needed so we can get him a defibrillator ASAP. xxx
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