Our site needs cookies

We need cookies to help you sign in, create a fundraising page and donate. If you want to fundraise or donate on our site, you will need to turn on cookies How to turn on cookies.

It looks like you are trying to access a charity account.

Please click here for the charity sign in page. If you are not trying to access a charity account, please contact us.

Profile

Duncan Jane

For our brave little soldier - Oliver Jane

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p]I am running the 2019 London Marathon in memory of my brave baby boy Oliver....[/p][p]Some of you already know, and some may be very surprised to hear (as I am a very private person), that around 7 years ago our beautiful baby boy lost his life to a rare form of epilepsy called Ohtahara Syndrome when he was just 12 weeks old. [/p][p]As a father you would do anything for your child. You fight for them and you would do anything to take their pain away but when you can't you just feel helpless. Oliver brought me so much happiness and pride, but no father should ever have to say goodbye to their child - it breaks you in a way you have never been broken before. [/p][p]Oliver is always with me though, and every time I think of him he makes me smile knowing he gave everything he possibly could in those short 12 weeks, so I am doing this for Oliver, to keep his memory alive. I can't wait to smile non stop for 26.2 miles on 28th April to show him how proud I am of him, knowing he will be on my shoulder running with me. It is our hope that by taking on this challenge on behalf of Epilepsy Action we will raise awareness and provide much needed funding, so they can help others facing what we went through, and I would be very grateful if you would support me by raising money for this great cause. [/p][p]For those of you that would like to hear a little bit more about Oliver's story, please read on....[/p][p]After a normal delivery we were so excited to finally meet our baby boy, Oliver was our first child and was so desperately wanted. Within a few days of the birth the nurses picked up on some unusual twitches and he wasn’t feeding. As a precaution he was moved to the Special Care Baby Unit where he had lots of tests to rule out common illnesses which all came back normal. It was here that the doctors said these movements were seizures and he was given anti-seizure meds to control them. He reacted badly and as a result starting having convulsions and breathing problems which meant he had to be put in ICU and on life support. This was the start of a nightmare that no child should have to face. As the seizures were unexplained, Oliver had to be transferred to the Intensive Care Unit at Alder Hey children’s hospital in the hope that the neurologist could help him. For 3 weeks we sat helpless at his bedside holding our babies hand and watching him being so brave whilst they took daily blood/did numerous other invasive procedures - still hoping and praying that he would be ok. [/p][p]After an unusual EEG it was discovered he had an extremely rare form of Epilepsy called Ohtahara Syndrome which meant a short life expectancy. After the initial shock we took strength from our amazing little boy and decided we would make his time the best ever. His condition meant that the seizures were hard to control but Oliver responded well to the new meds and they even managed to get him off the breathing support and when he was 4 weeks old we finally got him home with a feeding tube. A week later he was admitted back to hospital as he stopped breathing, he was put on breathing support and after numerous attempts to reduce the support Oliver wasn’t able to manage on his own. We had to make the painful decision to say goodbye to our child and withdraw the support. We were put in our own room and had to sit and watch his struggle to breathe. After a rocky few hours Oliver did the unthinkable and pulled through and 24 hours later the doctors allowed us to take Oliver home to spend his remaining life surrounded by family. The doctors didn’t know how long we would have, whether it would be hours or days but in the end we managed to have another six weeks with our beautiful boy. In those six weeks his seizures got harder to control and he was having episodes where he stopped breathing due to the seizures. Being the trouper he was he barely cried and was so brave. In the end it was just too much for his little body to take and he finally passed away peacefully in his sleep when he was just 12 weeks old.[/p][p]They haven’t found any medical reason why Oliver developed this condition so we would ask you to please support us and help us to raise money for Epilepsy Action so that they can research into these nasty and rare forms of Epilepsy and hopefully find a cure so that innocent babies like Oliver and their parents don’t need to go through what we have. [/p][p]Every penny counts, so please help us help others from losing the people that mean the most to them![/p][p]Thanks, Dunc & Susie [/p]

Share Duncan's story

Other ways to support Duncan's fundraising effort

Turn your unwanted stuff into donations

together withziffit.com logo

Earn free donations when you shop

together withkindred logo

Supporters

Jun 5, 2019

Clare Lawrence

Sorry this is a little late. Well done.

£15.00 plus £3.75 Gift Aid

May 18, 2019

Kath (Lyn's friend)

A wonderful achievement

£10.00 plus £2.50 Gift Aid

May 16, 2019

Granny and Grampy

In memory of our darling grandson Oliver on his birthday. Always in our hearts and minds.

£200.00 plus £50.00 Gift Aid

May 11, 2019

Maria Mulliner

Well done Duncan - great to see you all today!

Apr 30, 2019

Paul movel

£50.00 plus £12.50 Gift Aid

Apr 30, 2019

Anonymous

For all the brave babies.

£5.00 plus £1.25 Gift Aid

Apr 29, 2019

Kate Phil Georgia and Oliver

Well done! Love to you all xx

£15.00 plus £3.75 Gift Aid

Apr 29, 2019

Brooke and Andrew Russakoff

Apr 28, 2019

JANE AND HAL

WE ARE SO PROUD TO KNOW YOU AND YOUR FAMILY. WELL DONE, DUNCAN.

£30.00

Apr 28, 2019

Lyn and Vicki xx

Well done Duncan, such a remarkable achievement. Oliver will forever be in our thoughts and hearts.

£50.00 plus £12.50 Gift Aid