Delilah’s story

Delilah started having seizures on day 3 of her life. She was subjected to test after test and was placed on many different medications with no apparent cause.
At 7 days old She had to be placed om a ventilator and transferred to a specialist childrens hospital as the medication she was on was affecting her breathing.
After a few days in ICU she was taken off the ventilator and spent a further 5 weeks in hospital. We where given access to genetic testing and the results were rushed to 2 weeks instead of 6 months.
We then discovered our precious girl had KCNQ2 Encephalopathy, she inherited it from her dad and we had no idea he carried this gene mutation. Delilah has an older brother, Henry who is 2 and currently doesn’t show any signs of KNCQ2.
Delilah is currently seizure free on daily medication and even though we don’t know how she will grow and develop she will always be loved more than she will ever know, our perfect girl 🩷💜