9 years ago

9 years ago, at almost exactly this time of night, I sat in a hospital cubicle with my 3 yr old daughter Anna, phoning those who needed to know to tell them that Anna had leukaemia. The story from then until now is in the archives of this blog.

Anna, 12 yrs old, is now in her first year at secondary school and living life to the full. She is a happy, kind and thoughtful girl who loves being with her friends and doing all the same kind of stuff as other 12 yr olds. Leukaemia is becoming an increasingly distant memory. SMA now rules our lives.

Mostly life is good, but just sometimes the challenge of raising a child with SMA becomes almost unbearably difficult. Not because of the help Anna needs with every part of her day to day life, not because of the interrupted and sleepless nights, not because of the endless meetings, appointments and assessments nor even because of the limitations on my own life. But because some of those very organisations who are supposed to help Anna instead use their statutory powers to make our lives even more difficult than they need to be. Their lack of transparency, accountability and at times rational thought makes it almost impossible to challenge their actions and they cause us more stress and distress than anything else. They try to disable us more than we can ever be disabled by SMA.

Luckily we have the love and support of our family, friends and many others who help us in every way possible. As always, we are truly grateful.

X

---