Alice was born on 8th February 2017. Unfortunately, during her newborn checks doctors were unable to detect the red reflex in her right eye, she was not responding to the vision tests due to a lens opacity in her right eye. Alice was referred to Birmingham Children’s Hospital who diagnosed her with a congenital cataract. A rare condition affecting around 100 babies born in the UK every year.

We were left with 2 options; to leave the cataract, or to operate at 6 weeks to remove it. This was a decision we had to make after only being parents for 6 days. If the cataract was left then Alice would have lost vision in her right eye, so we made the decision to operate.

In March 2017 Alice had her first operation as a tiny 6 week baby. This was to surgically remove the natural lens of the eye. To help give the eye the best chance of developing in line with her ‘strong’ eye. As Alice had to have her lens removed this involved inserting contact lenses daily in to her Aphakia eye and extensive patching of her strong eye

Cataract surgery in childhood results in a 50/50 chance of the patient contracting Glaucoma at some point during their life. Unfortunately for Alice she contracted Glaucoma almost straight after her surgery. Glaucoma is when there is too much fluid build up in the eye, which in turn damages the optic nerve, and if left untreated, would result in blindness.

To date Alice has needed 2 laser surgery treatments and 2 major surgeries to implant extra drainage tubes within her eye. She is also scheduled for her next surgery in August. Her daily routine includes 9 eye drops per day (which is a relief from 13 post surgery) as well the continued use of medication, contact lenses and patching.

At 18 months old this is obviously very stressful for both Alice and us as parents, mainly as she is still too young to understand what is happening. Despite this, Alice is a happy toddler who hasn’t let her condition hold her back (believe us she knows her own mind!) She attends nursery 3 times per week which has helped her development, and we see improvements almost every day when we pick her up.

The team at Busy Bees nursery in Longbridge, along with funding from the RSBC have played a key role in Alices life and her development. To raise awareness and funds for the RSBC, Jenny, Sarah and the team at Busy Bees have decided to take part in the RSBC Blindfold Run 2018 in London on Sunday 4th November.

We will also be participating in the 10k run which involves being blindfolded and tethered to your running partner for 5km’s each.

If you would like to donate we would be extremely grateful for any contribution, which will go towards helping children like Alice who suffer from sight issues and blindness.

Thanks,

Matt, Gemma and Alice x