My daughter Hollie is 9 months old she was born with a rare genetic condition called Blepharophimosis ptosis epicanthus inversus syndrome (BPES) it affects 1 in 50,000 people, she has abnormally narrow eyelids horizontally, she uses chin elavation to look under her eyelids.

Me and my husband are trying to raise enough money to be able to get hollie the operation she needs, we have been to the nhs numerous times to be told they would not need to opereate unless her vision becomes impaired. ( which to us seems odd as surely you would fix it before her vision changes)

we have been to see a private hospital (moorfields eye hospital in London) for a second opinion (with help for cost from a family member) which the consultant there has also agreed with me and my husband and says she will highly benefit from a temporary surgery ideally before she starts walking and to prevent any neck problems in the future. She will have her main operation when she is 5/6years old.

we went back to our NHS hospital with the medical report from moorfield private hospital(as they requested) to be told once again they will not do the temporary operation.

We have asked time and time again to be trasfered to moorfield via NHS to be told its in the middle of transfer, then weeks and weeks later that they wont do it.

It has got exhausting and frustrating And this is why we have ended up here.

We just believe that our little girl deserves the best.

any donations would be very muchly appreciated. And please shar share share !

Thank you for taking the time to read Hollies story.