How Am I?

Posted on: 01/05/2014

Many of you email privately to ask how I am in the midst of all of this. Let me tell you. I am lost without Angelina. I miss my husband terribly when he is not here, and fret constantly about the fact that he has to juggle endless travel back and forth to Milan, a relentless full time job, looking after Angelina and a never-ending saga with our builders. On top of worrying about Ava. Never let it be said that men can't multi-task. I have gained at least 10lbs from the twice daily rounds of hospital pasta. Each morning I awake to the back ache of a 90 year old. I miss TV that is not CNN. I worry that I may have forgotten how to drive. Every day is a bad hair day. Having to face a diagnosis of MLD is horrendous. Being a helpless bystander as my beautiful girl has endured the devastating side effects of punishing chemotherapy has been agony. Yet nothing could be worse than being told there is no hope. So this is how I really am: I am genuinely ecstatic to be here. I am thankful every day for Dr Biffi and her team and their dedication to conquering rare diseases. I am bowled over by the outpouring of love and support from our friends and family. I am unable to find the words to articulate how grateful I am for Ava being given this chance of life.