I have been following the story of a little boy named 'Ryan'. He is almost exactly the same age as Felix and over the last few weeks he has suffered complications as a result of heart surgery. Reading the latest update from his Mum today, I felt overcome with emotion. After meeting with Medical Staff`, Ryan's family have been told that there is absolutely nothing more they can do for this precious little boy. His parents reluctantly agreed to a DNR (Do Not Resuscitate). The hospital are going to wean Ryan from his medication over the coming days, but will try and make him as comfortable as possible. They have been told that at the most, they may have a month or two with him. Ryan's Mum is planning on filling the coming days with as many memories as she can. She has already made some prints of his tiny little feet.
The Down Syndrome Community is incredibly close. Whether we know each other personally, or only know each other through Online groups/Facebook, we feel involved with each others lives. There is noone else who understands the excitement we, as parents of kids with Down Syndrome, feel when a Mum or Dad posts a photo of their 4 year old's first steps, or the joy we feel when one of our kids signs their first word. At the same time, we feel anxious for each other when one of our children is facing medical complications and cry with each other when one loses their fight for life. It sometimes feels like a daily roller-coaster ride.
In memory of Iris- A beautiful angel with Down Syndrome who left this world not so long ago; and love to her Mummies who still struggle every day they are without her x x x
In Memory of little Jamie- Who fought bravely for the first couple of months of his life until he couldn't fight any more; and love to his family who have had to find the strength to go on without him x x x