Our brave little daughter Llewellynn also known as Lulu now 8 years old. Was a healthy normal little girl whom played netball,tennis, chess, and did swimming before she was diagnosed on 24 June 2016 with a very rare condition called Heterotaxy syndrome, with Atrio venticular septal defect (AVSD) where the heart has only 3 chambers instead of the normal 4 that usually exists she also has abdominal situs inversus with levocardia which means that her organs like spleen,liver kidneys is situated in a mirror image than normal she also has 2 left lungs and a single atrium. Interupted IVC, and AV valve with small tear that needed attention an urgent open heart surgery was scheduled for 13 September 2016. In surgery they made a split in the heart chamber to make it 4 she also recieved a permanent pacemaker as her heart was having sick sinus syndrome. She was aslo diagnosed with Apd ( auditory possessing disorder) in feb 2017. From the outside she looks like a normal little girl but what goes on inside her is a mystery.
We take every day as it comes as she can be fine now but it can change in minutes.
She is an inspiration to us and we learn so much from her. Its hard to explain her conditions as no child with Heterotaxy Syndrome is the same as the next one.
Lulu still receives ongoin medical treatments and we travel 300km to get her to spesialist.
Thank you for taking the time to read about her.