Charlie and Drustan Ward's 13 month old son Samson has a rare genetic disorder Costello Syndrome, which affects just 300 people worldwide.
Samson is unable to feed orally and feeds through a gastrostomy tube. Unfortunately, he also has a development delay and for a 13 month old is not very mobile Ã¢Â€Â“ he is yet to start crawling. In addition to his many problems, he also has a heightened risk of cancer, for which he is scanned every three months.
For Charlie and Drustan, one of the hardest battles has been that of sleep deprivation. For the first few months of his life, Samson was in need of 24 hour attention and would only sleep for 20 minutes at a time. Charlie and Drustan now employ a carer for two nights a week and Samson is making great progress. He can now roll onto his side, and loves going to the swimming pool.
During pregnancy, Mum Charlie was measured as big but after extra scans, nothing further was detected. When he was born, Samson was very ill with fluctuating blood sugar levels and breathing difficulties; he was also unable to breast or bottle feed and lost a lot of weight. After 5 months of tests Samson was eventually diagnosed with Costello Syndrome.
Costello Syndrome is a rare genetic disorder which targets physical attributes as well as developmental delay and a failure to thrive. At the moment it is hard to gauge how the condition has affected Samson mentally. He is not crawling at the moment and has real problems sleeping and feeding but at present his eyesight and heart are ok.
Samson has a lot of discomfort feeding and is unable to feed orally and even feeding through the gastrostomy tube vomiting is still a problem. Slowing the feeding process eases the discomfort, at the moment he has each feed over 1 hour 20 minutes and with four feeds a day, it takes up a lot of time, as you can imagine.
Samson's first few months were incredibly difficult as he never slept for longer than 20 minutes at a time. Mum Charlie recalls 'The first 5 months when he wouldn't sleep or eat, which is what most babies do,
were very hard. It felt like he couldn't do anything normal. The stomach tube made feeding so much better and once we had the diagnosis things improved too.'
The family have a good support network with a carer for two nights a week and for eight hours during the week too Ã¢Â€Â“ giving Charlie and Drustan help and the opportunity to catch up on some sleep! Charlie returned to work as a teacher for a few days a week in the summer term.
Samson is a really cheerful baby and continues to make great milestones in his development. His movement is progressing and he is now able to roll onto his side. He loves swimming and being in the water too.
Charlie and Drustan are both optimistic and realistic about the future. As Charlie says, 'It's inevitable that Samson will go through Special School and end up living at best semi-independently; but at the end of the day we just don't know, his future is not going to be straight forward but you just don't know.'
Samson has helped to raise awareness of children's genetic disorders with the UK children's charity Jeans for Genes Day which invites everyone to wear their jeans to work or school in return for a donation.
Jeans for Genes is the UK children's charity that aims to change the world for children with genetic disorders. Over the years, Jeans for Genes has raised a staggering 35 million plus. The money raised helps fund vital care and support services for children and families affected by genetic disorders, as well as ongoing research into these conditions.