My daughter Ferne, who is six years old at the time I am writing this, has always had to overcome struggles. She was diagnosed with Cerebral Palsy at the age of three with her day to day life being affected by a lack of balance, coordination and core strength. In spite of this, Ferne has always ploughed through, giving her best efforts in everything she does!

Next came the news that Ferne has a significant immunodeficiency...This challenge was not visible to the naked eye and gave way to many medical appointments often with her having to endure blood tests, infusions and being prescribed medications to take everyday. Again, Ferne has fought through this, becoming very brave and very patient.

This journey led to Ferne being diagnosed with Ataxia-Telangiectasia last year. AT is a rare, complex and varying genetic disorder and so far there is no cure. Through these dark and scary times there have been two rays of sunshine. First is Ferne herself being strong, brave, gentle, loving, and just simply amazing! Second are the AT Society, who rushed in to the picture as soon as Ferne was diagnosed offering all the knowledge, support and understanding we could ask for.

The AT Society is the only charity supporting children and young people with Ataxia-Telangiectasia (AT) and funds for research to find a cure. They offer families an essential lifeline of advising and support through the many challenges they face.