In the summer of 2008 our wonderful son Samuel was born premature at 26 weeks gestation. After 4 months we were allowed to bring our little boy home on oxygen and other medical monitoring. Unfortunately his troubles did not end there and Sam continued to require a high level of Hospital input, spending 2/3 of his life within a hospital room, mainly in our local hospital Queen Alexandra Portsmouth (QAH).
After several years and many, many tests (that resulted in an array of diagnosis) Sam underwent a Sibling Bone Marrow Transplant from his older brother Kiran in October 2012.
Sam’s time at home has been limited and we try to make his life as ‘normal’ as possible by offering him the same opportunities as an otherwise healthy child would receive. Church Farm, Haven Holiday Park in Chichester has been part of this ‘time out’ process for a few years now and we generally take 4-5 days during the summer holidays so that we can refresh ourselves and more importantly spend quality time together as a family.
During a visit to the park we began to talk about how great it would be to be able to offer other families with sick children, some time away from the daily routine of meds, equipment and hospital visits. It was then that the idea of starting Sam´s Haven came to us. As soon as we got home we asked family friend Karyn to help with the enormity of the task that lay ahead of us and received the blessing of our family and other friends.
Below is a video of Sam's journey through his hospitalisation at Great Ormand Street Hospital during his bone marrow transplant from his Brother Kiran.
Posted February 2014
Sam continues to undergo a rigorous daily routine of medication and physio.
Like others in his situation, this has a huge impact on normal family life and takes careful managing to ensure that siblings continue to enjoy their own life without feeling ignored or neglected.
The short video below shows a typical 24 hours in Sam's life and clearly illustrates why we want to help other families in a similar situation to ours.
A very small selection of Sam's hospital stays.
Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.
The campaign is brought to life by thousands of individuals and organisations who come together to organise activities and events throughout the UK, drawing attention to just how important caring is.
To illustrate what Carers can go through, we at Sam's Haven decided to make a new video. We would like to say that this is our story and can differ greatly to everyone elses.
Having another child with ADHD/ASD and previously working in mental health, we fully understand that the pressures are just as great regardless of the disability.
Our aim is help people understand that being a Carer is a full time job that you can't just call in sick for.
Not only full time but 24/7. Even when Sam is asleep we need to monitor him and get up frequently. Between midnight and 0600 Sam's alarms went off five times last night alone.
The holidays we offer are just as much for the Carer as it is for the child.
You can view the new video on the link below.
We will post a further update on Sam's progress some time in 2017.