Hi everyone

My name is Sandra and we are currently fundraising for our beautiful little girl Aria who is currently 4 years old.

We’ve thought a lot about whether or not to do this as we know that times are hard for people. However after speaking with lots of friends and family, have been encouraged to do this as lots of people want to help

Aria was diagnosed with a very rare condition called Blepharophamosis syndrome in 2021 and we struggled as parents to get any support or help with her condition due to lack of knowledge around it. From birth and knowing something “just wasn’t right” we were told over and over that all was fine.

Following us researching the condition over time and linking in with other families across the world the best option for Aria is to have further surgery. This surgery however is not available to us on the NHS and is going to cost in excess of £20,000. We are hoping that with the help of fundraising along with spreading an awareness of Aria’s condition we can raise funds to allow Aria to have her next operation and go on to raise funds for a newly established charity which has really helped us in reaching the decision about this surgery.

Aria needs surgery in Spain as soon as possible and we have decided to fundraise to try and get it done as soon as possible as ideally it should be done before she starts school.

Thanks for reading and any donations would be massively appreciated ❤️

Aria’s condition is:-

Blepharophimosis (BPES - Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome)

BPES is a genetic disorder characterized by abnormal development of the eyelids. It can cause:

Limited Vision: The small opening of the eyelids can restrict peripheral vision.

Ptosis (Droopy Eyelids): The upper eyelids may droop, which can obstruct vision and lead to amblyopia (lazy eye) if untreated.

Epicanthus Inversus: An inward fold of skin near the inner corner of the eyes, affecting appearance and sometimes eye function.

Developmental Delays (Type 1 BPES): In some cases, BPES is linked to premature ovarian failure in females, leading to infertility.