CDKL5 - Isla's Journey

CDKL5 - Isla's Journey We would love to share Isla's journey, her achievements, struggles and just a day in the life of Isla

Another day another appointment for Isla.An increase in her epilepsy meds to hopefully control these seizures.Our tough ...
19/11/2024

Another day another appointment for Isla.

An increase in her epilepsy meds to hopefully control these seizures.

Our tough little angel 💜💚

Isla starting her final year at nursery 🤍This is scary for me as we now have to start discussing what school will be bes...
24/08/2024

Isla starting her final year at nursery 🤍
This is scary for me as we now have to start discussing what school will be best for Isla!
She is growing up so fast ❤️

Opthalmology for Isla today, Isla has CVI and an outwards squint, and as of yet they have been unable to get a real meas...
20/12/2023

Opthalmology for Isla today,
Isla has CVI and an outwards squint, and as of yet they have been unable to get a real measurement of her vision.
As always the staff at the Queen Margaret were amazing with her, they even have a great sensory room which is handy when you have to wait half an hour for the eye drops to kick in.
We have left with a prescription for glasses and we have to try the patches again 🙈
Glasses may actually make the outwards squint worse but we have prioritised Isla's vision.
It was a lengthy appointment and poor Isla was shattered, 💜

Our quarterly appointment with Isla's consultant today, Dr Cruden. He is happy with the progress she is making, baby ste...
28/03/2023

Our quarterly appointment with Isla's consultant today, Dr Cruden. He is happy with the progress she is making, baby steps but It's in the right direction.
A slight increase in medication to try and reduce her seizures 💚

27/03/2023

I have created this page for those who would like to share Isla's journey living with CDKL5, the highs and lows the ups and downs!

Isla starting having seizures at 5 weeks old, her CDKL5 diagnosis came in June 2020 at 5 months old, at the time, the consultant didn't know too much about the genetic disorder. We were told, Isla will never live a normal life, she may never be able to hold her own head, sit or walk. She may be wheelchair bound, she may never gain the use of her hands, she may struggle to eat, they just didn't know..... but they did say every child with CDKL5 is different and Isla will have her own journey.

Isla is now 3 years old, she acheived sitting at 10 months and walking at 17 months. Isla does not yet have any words and is unable to communicate by pointing or gestures, at the moment crying is her only form of communication. Isla has Global development delay as she is delayed in every area, her vision is also effected which you will notice in photos, Isla covers her right eye alot. Isla loves her food and has the best smile and laugh 🤍

Isla has attended Gordon Cottage Child Development Centre since around 8 months, she finishes up in April to attend Nursery!

I will use this page to share Isla's day-to-day life, the struggles, the appointments and of course all of her achievements 🤍

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Dunfermline

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