HOW FAR WOULD YOU GO FOR YOUR CHILD?
Track my progress here
My eight year old daughter Hasti has CdLS. CdLS has no treatment options and without a treatment, my little girl will never achieve her dreams. So I am fighting to raise the £400,000 needed to develop the first ever treatment for this life-limiting, life-shortening condition.
To raise the money needed, I will be walking 600 miles barefoot across Britain; starting in Weymouth in July and finishing five weeks later in Aberdeen.
If your child had a rare condition and needed an expensive treatment not covered by the NHS, how far would you go for your child? is there anything you wouldn't do?
This is the question that I have been asking myself as I have fought to raise £400,000 for 'CdLS Hope for Hasti', a charity I have started with the aim of creating a gene therapy for Cornelia de Lange Syndrome (CdLS).