Thanks for taking the time to visit my JustGiving page.

If you are reading this then I hope you are half way to donating some money to support me, and for that I thank you. I know together we'll make a difference. I'm doing this in memory of my friends little boy who died too soon on the 20/04/12 and currently there was nothing anybody could do to treat or cure him.

Here my friends explain a little about how 'The Sick Children's Trust' helped and supported thm :

Late at night on the 20/3/12 after a 6 month difficult battle with Mitochondrial Disease our precious son Jacob  stopped breathing. At 11pm in a operating theatre we were told he might die, that the Dr's would try to ventilate him but there were no certainties it would work. He was 16 months old and needed his mummy and daddy to be near. We spent the whole night with Jacob and he did make it through. But the following day we were told by his doctors there was a high chance that Jacob would not be coming home with us again. We wanted to spend as much time as we could with our Precious boy, so we couldn't even think about going home. We live 25 miles away from our local hospital which is over an hour’s drive away, and the thought of being this far away from him in such a vulnerable condition was just unimaginable, but we were unable to stay on the ward either. What would we do. Even a local hotel wasn't close enough when things could change so quickly. It was when we were facing this situation that we were offered a room in The Sick Children’s Trust’s Acorn House.

I cannot begin to explain the weight that was lifted off our shoulders. It really was a ‘Home from Home’ and what was amazing is it was free to stay and there was no paperwork to go through. A nurse on Jacob’s ward simply handed me the keys at about 4 o’clock in the morning and the room was ours. Bob and I were exhausted so it was amazing to just be able to go back to a safe place and rest.

The house itself was brilliant; it was only around the corner from Jacob’s ward and it took less than five minutes to walk there. Our bedroom even had a phone line connected straight to the ward which was great if the nurses needed to contact us, but also because I could call through at any time. I remember waking up in the middle of the night sometimes and just phoning through to make sure everything was ok.

 

We began to prepare for the worst and family and friends came to visit Jacob on the ward to say goodbye. We cried every day by his bed side. We even got Jacob christened in PICU, which was a really emotional service but lovely to do for him at the same time.

 

Acorn House helped us in so many ways. With so many family members and friends coming to visit Jacob, it was so helpful to have the house that we could take them back to, for a cup of tea and a proper chat or just some much needed peace and quiet. It also gave Bob and I a sense of normality at a time when our world was turned upside down. We were able to cook a home-made meal and sit on the sofa while watching the TV. It also helped to have other families around us who knew what we were going through. They immediately understood and could sympathise with our situation. We are still in touch with some of the families we met in the house now and they have become good friends. 

Having our bedroom to go back to at night was really helpful to us too, especially knowing the upsetting news that Jacob didn’t have much time left. The ward was a constant hub of noise and chaos. Having the quietness of our bedroom ensured we had a place we could go to cry and let all our emotions out. We needed to grieve and come to terms with what we had been told and having our own space was essential to do this.

 

I sat with Jacob every day and begged him to come back to us, to just open his eyes and come home. He couldn’t leave the world yet, we had so much we wanted to do with him, he had so much left to experience, he couldn’t leave us.

 

Jacob listened to me and was able to come home after two weeks in PICU. Doctors asked us what we wanted them to do if the situation was to happen again and we made the heart wrenching decision for them not to intubate him.

 

Bob my husband  took a couple of months off work and we made a list of things we wanted Jacob to do before he died, making his last few months as happy as possible for him. 

 

Sadley just over two weeks later at 11:30am on the 20th April 2012 our darling Jacob died peacefully in my arms with his Daddy holding his hand. 

 

We miss Jacob every day and there will always be a hole in our lives because he had to leave the world so soon. Jacob was with us for just 501 days but he changed the lives of Bob and I and 100’s of other people (over 200 came to his funeral). We will be forever grateful to The Sick Children’s Trust for enabling us to spend as much time as possible with our Jacob Bear. Without them, we would have faced sleepless nights on the hospital floor or in the car, as there was no way we were going to leave his side and go home

 

 Please help us make a difference in memory of Jacob

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