When Bella was born her squashed little face melted our hearts and we felt love like never before.
Bella didnâ€™t go home that day, in fact we didnâ€™t get to come home for 8 weeks due to seizures, reflux pain and feeding issues. Bella was having seizures every 20 minutes at worst and each one broke our hearts.
SCN2A related disorders are a group of epilepsy and neurodevelopmental disorders, each caused by changes (mutations) in a gene called SCN2A.
These disorders range from mild to severe
Bella's variety is categorised as infantile epileptic encephalopathy (IEE) - characterised by seizures beginning in infancy (before 12 months of age) followed by developmental delay.
Diagnosis aside our daughter is happy, beautiful, loves cuddles, is gentle and lights up rooms with her giggles.