Thursday, 7 June 2012


Sadly, amongst all the joy of raising children with Down Syndrome, there are sometimes things which happen that are nothing short of devastating. Approximately half of all children with Down Syndrome are born with a heart defect; many requiring surgery. Some have serious bowel or respiratory problems. Although the majority of these children have successful surgery/treatment for their health conditions; every now and again one of these beautiful little ones loses their brave fight for life.

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.

I cuddled Felix this afternoon and tried to imagine, even a tiny bit, what Ryan's family are going through right now. To be honest, even trying to imagine their pain was too much for me. It was overwhelming. I felt physical pain in my chest. I cannot begin to know what they must be feeling. I hugged Felix so close; and although I was so thankful for his health and for his life, I grieved for Ryan's family as they enjoy what looks to be their final few cuddles with him. Life can be so cruel.

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.

For Iris
Our children are precious. Some are only on this earth for an unfairly short time, but one thing is for certain; these incredible children touch the hearts and lives of every single person they come into contact with and our lives are better for having known them. Ryan and his family will be in my thoughts every day. I will be hoping that his tired, weak little body will somehow find the strength to keep going so his family will be able to enjoy him for many years to come.

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


  1. Beautiful post. It was sad reading about Ryan today wasnt it. It just doesnt seem fair does it? It isnt fair!!!! Hug Felix for us too... xx

    1. Not fair at all. I think we'll all hug our little ones a bit tighter today x x x Love to sweet Jaxon x x x

  2. xxx LOVE your post and I so feel the same way... xxx to Felix

    1. Thank you Dani....Kisses back at you from Felix. It's times like this that make us take a step back and really appreciate those we love and realise that life is short; make the most of every day x x x