On the 29th of June 2016 I had one of the happiest moments of my life, my beautiful little princess, Matilda, was born.

After Matilda had come home she had been developing perfectly, she was ahead of all her milestones and had just had her first laugh. At 4 months old Matilda began to have seizures, panicked and in distress we rushed her to hospital. After a 3 week stay we had been told that these seizures had nothing to do with her cyst, which we thought were causing the problem, only to be told that Matilda has 1 of 2 conditions these were Infantile Spasms and Ohtahara Syndrome (I will post links to both these conditions below). Basically we had been told that our daughter has rather an 80% chance of not developing any further and possibly regressing or would have seizures which would be very difficult to control and that she would essentially have a limited life span, of which most children do not live past the age of 2 years old.

We where and still are completely devastated, to see our beautiful little girl slowly become more and more subdued. She used to smile every time someone looked at her and now its rare to catch even one smile a week. We have recently seen another specialist who has told us that the future looks very poor for our little girl. The first line of medication has not worked and we are desperately trying new types of medications and trials to try and find some type of solace for our little baby. She is still having around 100 to 200 seizures per day.

We have spoken to specialist nurses and doctors who have explained the best way we can help Matilda. They have said that Sensory toys are excellent for helping to promote development and as Tilly is already falling behind this is more important than ever. Please if you can help us or even pray for our little girl we would really appreciate it!

https://www.epilepsy.org.uk/info/syndromes/west-syndrome-infantile-spasms

https://www.epilepsy.org.uk/info/syndromes/ohtahara-syndrome