Coming to terms with Shiv’s condition has been and continues to be extremely difficult for us, involving endless sleepless nights, crying ourselves to sleep, hours just holding Shiv in our arms, hugging him and wishing that we could take it away, feelings of anger and frustration while sitting with him while he sleeps …. “why is there no treatment, medicine has come on in leaps and bounds, yet there is no cure for Duchene…”
We have hope… We need hope… we will fight… we need to fight… we need YOU to help us… to Smile with Shiv
Shiv is not aware of his condition at the moment so we don’t talk to him about it. If you see Shiv please bear in mind that he is not aware of his condition, we kindly ask you not to discuss the condition in front of him, to talk to him about it or to highlight any muscle weakness. We plan to tell him when we feel it is right for him and thank you for respecting our decision.
Although not aware, he is now starting to ask why he can’t run as fast as his friends and why he can’t peddle his bike like his friends; we tell him it’s because his muscles are a little weak, we tell him that it is okay for his muscles to be this way and there is nothing wrong with that, we also tell him that if anyone asks why he can’t do something to say ‘it is because my muscles are not as strong’. We also stress to him that he should only do what he can and that it is ok for him to take a break if his legs hurt or if he gets tired, we also tell him that mummy and daddy are working very hard to help his muscles.