Jessie is now 16 years old at 81cm tall.
She was diagnosed at 4 and they said she would only reach 12. Cockayne syndrome is a premature ageing degenerative condition that causes the children to lose all skills such as sight and hearing. They have short stature, feeding tube due to choking hazards, reflux, bone and dental issues, heart and blood pressure problems and so much more.
Cockayne Syndrome children are some of the most beautiful, rarest people you will ever meet and you can’t help love them instantly.
She has been through so much in her lifetime but is still smiling, adores her close people, loves fiercely and is my absolute hero.