Olivia's journey

Olivia has been diagnosed at 9 months old with an extremely rare and life limiting condition called EIEE5/Ohtahara syndrome. A severe epileptic syndrome that means Olivia has an uncountable amount of seizures a day that don't respond to medication. They are drug resistant! These will progress and get worse as she gets older. This has been caused by a rare genetic mutation on her SPTAN1 gene. Olivia now has many conditions caused by the epilepsy.visual impairment,severe development delay (still like a newborn) microcephaly,feeding difficulties,awaiting surgery for a peg and fundoplication.brain regression,cerebral atrophy,movement disorder,ACC,non verbal doesn't cry,hypotonia,indwelling thumbs and feet.,dislocated hips and more!!!
Olivia's prognosis is not great,most children die by the age of 2 years. We are hoping with all the intervention we can keep olivia here for alot longer. But just incase we need to try and fit as many memories into such a short span of time!!!
I don't like appearing like I'm begging,that's not my intention,many people say to me they wish they could do something to help and well this is it. We still need sensory equipment and equipment like video monitors for Olivia,and we want to be able to go and enjoy days out as a family and go places that we can make special memories together.but all of that costs money,and being in hospital as much as we are with appointments and admissions things have got really expensive!we also hope to put towards an extension so Olivia can have her own room !! As the council say they won't consider helping till she's 4!! Time isn't something we are guaranteed!! I know not everyone has alot to spare,but if you have and you want to help us make those memories and changes then any donation you make will make all the difference to us and the kids.
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Thankyou Xx