This is my story.

Hi 🙋‍♀️ my name is Emily and I’m a pediatric nurse. I first met my husband in 2013 and before we knew it we had two kids and were happily married. My husband and our two daughters were born with a rare eye condition called aniridia, this led them to be registered as sight impaired. Aniridia is a condition where the eye has little or no iris (coloured part of the eye) and can also cause other eye conditions due to unique way the eye is developed.

Mine and my husbands health has deteriorated over the years causing us both to become disabled. In 2016 I got diagnosed with grade three osteoarthritis and a condition called trochlea dysplasia, this is where my knees dislocate 😱 This has lead me to change the direction of my nursing career and become part of the school nursing team. I have had to go through numerous investigations/operations and have recently been informed, at the young age of 30, that a partial knee replacement will be the only way forward to improve my quality of life.

As well as dealing with my own health needs, my husband Daniel’s eyes have deteriorated. In 2017 my husband developed a cyst on his stronger eye causing his unique eye to heal itself incorrectly. This healing process caused him to start losing vision out of his stronger eye. Daniel still continued to work with the help of Access to Work until he was sadly made redundant in 2018. Daniel has always been independent and determined to not let his eye condition affect his life. However, in the same year as being made redundant his eye deteriorated so much that he was unable to see anything except movement. This therefore led to him becoming severally sight impaired/blind. Daniel eventually had to have a cornea transplant in dec 2020. The operation so far has been classified as a success due to Daniel now seeing 2 meters away. He has to continue taking several eye drops a day and has recently been informed that the other eye will need to have the same operation due to it also deteriorating over time. As aniridia is rare we have no idea what causes the eye to deteriorate over adulthood. Further research is continuing so that treatment can be given to prevent blindness.

At the moment our eldest daughter is being assessed for a cane. This is due to her tripping over a lot because of her visual impairment. This happens a lot in our garden due to it being so uneven. Daniel has also had to have training with using a cane to help him mobilise independently as he was constantly tripping over and hurting himself when alone.

This has led us to our goal of a safe and accessible garden for me and my family so that we can remain as independent as possible. We have had occupational health help us to get the inside of our house to a safe standard for us all, meaning we don’t have to rely on carers as much, but sadly they can not provide funding for gardens.

Since Covid 19, we have been very grateful for our outdoor space but have sadly realised how dangerous the garden is with the amount of trips and falls our family has experienced. We would truly appreciate any contribution to help us get our garden to a safe standard. We would love to have a safe outside space that we could all enjoy without the fear of anyone falling over or getting hurt.