Imagine what it would feel like if your perfect baby failed to reach those all important developmental milestones we delight in seeing. Rolling over, holding toys, watching you and smiling, sitting up...with 2 older girls I soon recognised my third child was very different and was very distressed as it became more and more apparent that her development was severely delayed. Then her seizures started and I'd never experienced anything so terrifying or felt so helpless. So imagine then, a fourth child who after many checks in preganancy, appeared completely normal and my horror as I realised I was seeing another form of epilepsy in her, suddenly at just 4 months old. This time an agressive unrelenting type of epilepsy, that still causes hundreds of fits day and night. This is our reality, our day to day life and we would do anything to help our youngest girls get better.
So Isabelle and Siena are 2 of 4 Special Sisters! Isabelle is now 8 years old and Siena is just 2. They suffer from severe epilepsy caused by an as yet undiagnosed condition.
http://www.treeofhope.org.uk/special-sisters/
We need to raise funds to get the girls to a specialist clinic in America which treats children with drug resistant epilepsy. Little Siena's epilepsy is very much worse than Isabelle's and she has tried 9 different anti-epileptic drugs to date and is on a special diet for her epilepsy too, sadly this doesn't seem to be helping her.
As well as our aim to get the girls to the clinic, they both need constant therapy, to challenge their Global Developmental Delay and help them achieve their maximum potential. This therapy will include physiotherapy, occupational therapy, speech and language therapy, hydrotherapy and physiotherapy equipment.
Isabelle is learning to walk but cannot communicate, Siena cannot even sit up and is tube fed, so debilitating is her epilepsy. With consistent therapy input both girls can make progress and improve their quality of life, but with the incessant threat of severe epilepsy we are aware their lives are in danger everyday, as it continues to be uncontrolled.
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