Earlier this year my son Jacob got ill, coughing and feverish. Despite lots of rest, numerous visits to the GP and various medicines prescribed over a number of weeks he just kept getting sicker and sicker. When our local hospital did scans and X-Rays, they could see his lungs were riddled with an infection, that would just keep growing. No-one could figure out why it wouldn't recede and he was referred to Southampton Hospital, where he was to stay for many weeks.
The doctors at Southampton looked at all kinds of possible causes from TB to meningitis, but ultimately diagnosed that Jacob had a severe form of pneumonia which his body was unable to fight due to an extremely rare underlying congenital defect with his immune system, called Chronic Granulomatous Disease or CGD. After several more weeks of intravenous medicines plus various oral medicines, which continue to this day, the pneumonia did recede, although the infection remains in his lungs, kept at bay by the meds rather than eradicated. In the New Year, Jacob will be going into Great Ormond Street Hospital in London for several weeks for a Bone Marrow Transplant. There is a 90% chance this will cure him.
My family has been lucky to benefit from the skill, knowledge and fortitude of the staff at Southampton Hospital. I am in no doubt that they saved my son's life. However, even though doctors and nurses in London will now take things forward for Jacob, my connection with Southampton Hospital will not end there.
As we went in to Southampton, there were children on the ward much sicker than my own who were still there as we checked out to continue Jacob's care from home. Children suffering from seizures and more serious illnesses. Shortly after we left Southampton Hospital, some friends of ours were admitted in; their four year old son has cancer, with one specific tumour pressing on an artery requiring emergency surgery. The Southampton team saved that boy's life there and then. He remains a regular patient at Southampton, receiving regular ongoing treatment. I could go on to name a number of people my family know who have received or are currently receiving care from the team there.
Families staying with their children in a hospital feel a mixture of helplessness, fear, boredom, uncertainty and anxious waiting, punctuated by complicated medical updates and the distress of seeing your child in one form of pain or another. You want to do whatever you can to make your loved ones stay there as comfortable and peaceful as it can be in the circumstances.
So when I saw a poster inviting people to commit to a sponsored Sahara Trek to raise money for the Southampton Hospital Charity next November, I felt utterly compelled to do so. It should be gruelling but rewarding to do. It will consist of roughly 100km of walking across the open desert, followed by working at a project, such as a hospice or shelter for the elderly in Marrakech, where poverty is rife.
I aim to raise £5,000. I have been talking with the team in Southampton to look at how this might be put to the best possible use towards making many families' stays there as possible that little bit more comfortable. We were lucky, able to take in 3G technology and portable DVD players, laptops, etc, to keep Jacob entertained as well as connected with his school work. Not every family can afford this.
One of the ward matrons has kindly given me some examples of ways the money might be put to use, in addition to electrical maintenance which would enable working TVs, DVD players and Wi-Fi to be put into the children's ward, they are also fundraising for a number of other projects including the installation of an interactive floor in children’s outpatients. They have nearly hit the target for this and are approx £1.5 -£2K short at the moment. This piece of kit is to offer entertainment for the children attending clinics, particularly disabled children or those with special needs. Another project is to install a DVD player in the ceiling of the treatment room of John Atwell Day ward as a distraction aid whilst children are undergoing a procedure, estimated cost £5K.
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