My best friend Tania and I go back more than 20 years.  We met at uni and have not stopped chatting, laughing and being each other's rock since then.  We got jobs at the same time, got married within a year or two of each other and we were both pregnant at the same time.  Typical Tania had to go one further and have twins, rather than a singleton!  Her twin boys arrived by c-section 5 weeks after I had my daughter and we got each other through many sleepless nights and terrible toddlers, always at the end of the phone to each other.

Having hit all their developmental milestones the twins, Zach and Ruben, just never mastered being steady on their feet.  I remember one call where we discussed it and I encouraged her to call her health visitor saying "how bad can it be"?  The diagnosis was life changing.

Ataxia-telangiectasia is a rare inherited disorder that affects the nervous system, immune system, and other body systems. This disorder is characterized by progressive difficulty with coordinating movements. Affected children typically develop difficulty walking, problems with balance and hand coordination, involuntary jerking movements, muscle twitches, and disturbances in nerve function.  It is a life- limiting condition and there are currently no treatments or cure.

But it won't always be like that.  There is exciting researching happening and we really could make a huge difference.

If you have got this far, thank you and I am so grateful for your support.