Jacob's story

When Claire had to say goodbye to her little boy Jacob, her extended family were able to share in this precious time thanks to their local children’s hospice.

Facebook Jacob baby

"Our son Jacob was born with Mitochondrial Disease. When he was 14 months old we were told that there was no treatment or cure and he was unlikely to see his second birthday. We were put in touch with East Anglia Children’s Hospice (EACH) and we were just about to spend our first weekend there when Jacob became very poorly and sadly passed away at 16 months.

"He was in hospital when he died but we were given the option to take him to the hospice to spend the time there before his funeral. This is when the hospice allowed us to be a family for as long as was possible."

Saying goodbye as a family

"The idea of just saying goodbye to Jacob in the hospital was so awful. Instead we lived at the hospice for 10 days with our little boy. What was even more wonderful was that we did so as an extended family.

"Grandparents, aunties, uncles, cousins, godparents and friends came to be with us at the hospice. Some went in to see Jacob, others stayed outside giving us comfort and knowing they were still close to our little boy.

"His cousin Ethan, who was nine at the time, wanted to see him. He asked if he could lie on the bed with him and if I would read them both one of Jacob’s favourite stories. He asked if it was always this lovely when someone dies. This I feel has had a massive impact on his ability to deal with the loss of Jacob.

"We live opposite my sister and her children saw Jacob every day. It was like losing a brother. We ate food together, we cried, laughed and talked together all the while Jacob was still there, right up to the moment we had to say our final goodbye."

Mummy and daddy right to the end

"Family members chose when they saw him for the last time, in their own time. For me, my husband, and Jacob’s half-brother, that was the day of his funeral.Facebook Jacob with mum and dad

"My husband and I put him in his little casket, allowing us to be his mummy and daddy right to the end. His brother, with the help of daddy, carried him to the funeral car and into the church – able to be big brother to the end.

"The hospice helped us to be a family even in circumstances beyond most people’s imagination, in ways some might see as odd but that have helped us to live our lives after the most precious thing in our life had to go."

Every relative has the right to say goodbye in their own time

"Every parent, grandparent, auntie, uncle, brother, sister, cousin or godparent should have the opportunity to say goodbye in their own time, and to be a family right to the end – through to memory days and even beyond.

"At the moment that is not the case but it should be. Hospices need support because they offer help in ways that cannot be explained when you are lower than you felt possible. EACH at Milton put our family first."

Facebook Jacob


  • Julie 28 May 2016, 15:42

    So sorry for your loss but glad that you got the chance to be with Jacob till the end and also the extended family.
    I hear that hospices are not funded by the government they have to raise money to stay open I do hope that one day a hospice will be well funded and the next step from hospital or home for anyone knowing that there is nothing more that can be done medically.
    Condolences to the family and friends of Jacob. Fly high Jacob in a world where no more pain or illness but still in the knowledge that you are loved.x

  • Manda king 29 May 2016, 07:43

    Such sadness, how very hard to say goodbye ,but an example if how it should b if only all people In such situations were able to b treated so kind , its simple but means everything
    And makes such a difference. God bless Jacob and the dear family left behind x

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