Kiaora,
Jovannah was first assesed at the age of 17 months for Retts Syndrome. At that time her tests were negative but with new technology and more sophisticated techniques diagnosis of Retts Syndrome was confirmed in Jovannah at the age of two. A deletion of exons 3 and 4 of the MECP2 gene was identified which is a deletion reported in only two other Retts patients internationally. Jovannah is 9 years old, she is the youngest of 5, she has 3 much older brothers aged 29,28,23, and a sister aged 11. She is a aunty of 3 neices and 1 nephew. She attends a local kohanga reo twice a week which she absolutely enjoys, and spends a lot of time surrounded by her own little neices and cousins at home. As we are a bigger than norm whanau everyone shares with her care, we all are involved in making sure that we can give her the best we can in the best possible environment we can. Jovannah has taught us all not to take things for granted and made us closer as a whanau, she is our treasure ‘taonga’. “He kakano i ruia mai i Rangiatea”
