Let me start in the beginning . Leon was born a little early and weighed only 1.9kg but got 10/10 for his apgar and we went off home the very next day. He was perfect just a bit small. Even the preemie clothes were too big so when I got home I got out all my daughters baby love clothes washed then and they fitted perfectly. And this meant she had a real live little doll to help with. Then when he was 4 months old our world was turned upside down . I woke up at 5 o'clock in the morning to him blue in face and shaking, he was have a seizure. We did know this at the time as nobody in out families gets seizures so we thought choking and tried everything. But with no results we rushed off to the doctors rooms. He had now had about 3 seizures but they could not help us and we went off to the local hospital and were put in a room to await an ambulance, we still had to see a doctor. Well the ambulance never cam so 4 hours later and many seizures we decided to rush off in our car as nobody was helping us. we drove 40min away to another private hospital where we finally got some help. Leon's first year we spent more time in hospitals then at home because they couldn't get the seizures under control until he was on 7 different medicines to stop them . He gets all types of seizures from absent to the stiff bending to the facial to the violently shaking ones. But as a result he can now do nothing even less then he could at 4 months. the good news is I have his medicines down to 4.
The worst was watching him slowly disappear as the seizures damaged his brain more and the medicines doped him up more.
Since then he has had many more problems. such as a metabolic disorder where he cannot absorb any foods, a swallowing disorder which meant we inserted a feeding peg. He is now fed Frebini energy fibre which has been great as his sugar levels are no longer erratic he puts on weight and doesn't have chronic stomach cramping. He has had a brain op to separate the 2 hemispheres of his brain which has helped to shorten the seizures.
We have done too many testes in his first 2 years to try and discover why this happened but he is still undiagnosed and while he fits partially into many syndromes none of them fit properly and overlap so he has his very own syndrome.
It has been very hard to come to terms with and I had to learn a lot of things I wish I never had to, like suctioning , physio, exactly where they can draw blood from him( his veins are small) and how to deal with the knowledge that my child will never grow up and will die one day. I have made my peace with this in the knowledge that God made him perfectly in Gods eyes and it is not my place to question why but take care and love Leon as best as possible.
This has taken a toll on our family where my other children had to learn to deal with far more than other care free children, they are independent and happy. Our family is stronger and closer because of this. we have had to sell many things houses etc to be able to afford his care and we rent a house now but we are still able to together and that is all that counts. We are also able to hug him and for now that is great as one day we will only have his memories and photos.

Introduction

Meet Leon, my little miracle. He was diagnosed with severe uncontrollable Epilepsy at 4 moths old , the doctors gave him a 2 year life expectansy but he is now 10 years old . He has more problems than any one person should have to live with as a result he is very disabled and cannot do anything for himself (include sit or even play) but every morning he refreshes my faith by giving the most beautiful smiles when I wake him in the mornings. This is his only comunication as he cannot speak.
I am very blessed to have in my life, he has enriched our family more than words and has proved over and over how strong one person can be . I love him very dearly.