On the 31st August Team Jacum's Big Night out at Witchford Village Hall will be celebrating the life of Jacob Nicholas Wright who died at 16 months in April 2012 of mitochondrial disease. in his short life he was helped by 4 main charities. EACH was one of them.

Jacob was born a beautiful 7lb8 baby boy and completed our family. I had dreams about life as a mother but Jacob took me down a different path. One that I would not have chosen but one I am so privileged to have been on.

He started his life in the extraordinary way he ended it. He had a cataract and hearing loss. We didn't even know babies could have those. In truth I always knew that Jacob was not an average baby ( I don't like the word normal ) and voiced my concerns about his slow development, sleepiness and slow feeding many times to the professionals but was always told not to worry.

At 9 months he had his first seizure. A day his daddy and I will never forget. We were so scared. The first lead to another and another and as with the rest of his little life Jacob raised more questions than he gave answers. The Dr's were stumped as to what was wrong.

At 14 months after many tests and many different types of medication, the Dr's told us that that they did not think they would be able to control his seizures and that they thought he had Mitochondrial Disease either in the form of Alper's or Leigh's. Both being life limiting diseases with no treatment or cure. In addition they thought his time with us was extremely limited. Jacob was going to die and there was nothing we could do.

It was suggested that Jacob be referred to East Anglian Children's Hospices in Milton near Cambridge. We said yes straight away. Friends of ours had had involvement with them and we knew they would be able to help. Neither me or my husband had been able to really leave Jacob for the last 6 months. We knew the days ahead would be tough and we knew we needed support.

In March Jacob took a turn for the worse and was admitted in the middle of the night of the 20th March 2012 to PICU. Whilst we were there we were told Jacob probably had months not years left with us. The part of his brain that told him to breathe was dieing.

By some miracle, whilst in PICU we were told that our referral to the hospice had gone through. We felt such relief. When Jacob came out of PICU we went for a visit one rainy afternoon. We walked in feeling scared and alone. We had a tour and then sat down to talk to the staff. We arranged an over night visit but for me more importantly they asked me if I had any questions. Since the minute we were told how bad it was in PICU, I had so many questions running around my head. Questions I couldn't ask anyone else. Questions only a parent about to loose their child would think. How did we arrange a funeral, would they take him from me when he died, would he be left alone. The staff answered all those questions and more. I walked out of there feeling scared but no longer alone. On the way home we saw a rainbow, I knew even in this dark place there was still hope, not hope that everything was going to be OK but hope that we would get through this.

On the 20th April 2012, on the day he was due to visit the Hospice,  Jacob died in my arms very peacefully with his daddy holding his hand in a room full of love and hope.

He did go to the Hospice, he went for 10 days till the day of his funeral. Whilst we were there the staff looked after us with love and kindness, they helped us plan his funeral and they helped us say goodbye to our beautiful boy. We bathed and dressed him in his PJ's and he slept in a bed with his teddies duvet and pillow. The staffed played him nursery rhymes and talked to him everyday.

The hospice did one thing I will never ever be able to say thank you for enough for. It was the way they cared for the whole family especially my niece and nephew. They live opposite us and Jacob was a massive part of their lives. I was so worried that Jacob's death would be too much for them, that if would effect the rest of their lives negatively. The hospice staff helped to make the whole experience a beautiful one. We all spent time together as a family. Having food, talking, my niece enjoying all the toys my nephew the computer games. Ethan, my nephew who was 10 at the time said he would like to see Jacob. The staff said they thought that was a good idea. Ethan went into his room and looked at Jacob who had been made to look so peaceful and said "it just looks like he's asleep". He sat beside him, held his hand and then asked to get into bed with him. He cuddled him and asked me to read both of them a story. After he asked his Grandma "is it always this lovely when someone dies?".

We went to memory day and the children got another opportunity to see that death is not scary and that there is alway hope. Hope that we will be happy and that you can remember Jacob with joy. We donated Jacob's tricycle to the Hospice and Hallie my niece rode it around the playground shouting "this is baby Jacum's bike" (her name for Jacob) with such pride, it was beautiful.

Without Jacob and the Hospice, I am not sure anyone in our family would have the hope that we all do. They taught us of love and real hope. I can't imagine what it would have been like for any of us to go through this without them. Nobody should have to, every parent, sibling or family member should be offered the support we were. In reality they don't but one of our hopes is with organisation like Together for Short Lives and the fundraising people like us do around the country, one day they will. 

Half of the money raised on the night will go to EACH. However if you would like to donate and support this charity in memory of Jacob then please donate here 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.