It’s really hard knowing how to start this post but with my maternity leave coming to an end and me having to face the world this week I feel it’s time to open up about what’s been happening over the last few months.
The week before Christmas our world got flipped upside down. Over a period of time me, Drew and close family started to have growing concerns about our little Ada. She reached 5 months old and had yet to give anyone direct eye contact has constant wondering eyes and she wasn’t reaching certain milestones like rolling and lifting her head up reaching out for objects. We went from an eye appointment at the hospital expecting her to need a patch or glasses to quickly discovering far worse was wrong. The Opthermologist couldn’t find anything directly wrong with the optics of Ada’s eyes at that time but with her symptoms he had concerns about the pressure within her brain. We got sent for a CT scan that day, to find out that our baby girl has a very large arachnoid cyst in her brain. Everything suddenly got very heavy from then on. We were blue Lighted from York to LGI Leeds to their neurology department for what York thought would be emergency brain surgery that day. Never in my life have we ever felt so scared and shocked also so broken. I spent the whole time clinging onto Drew just praying all was going to turn ok. We get to Leeds and Ada gets sent for an MRI, which was traumatic in itself for us. we find out that this cyst has grown and grown within her brain over time causing her brain damage, it’s blocking the signals that her eyes send to her brain to see resulting in her being blind other than being able to see Light. After lots of monitoring in Leeds and talks with the neurosurgeon they believed that sending Ada home for Christmas with the family was the best course of action, and to return in the new year, she’s had constant monitoring by multiple specialists Since Christmas. our life has been constant appointments constant worry anxiety and stress.
We have now been told that even with surgery Ada only has a 1% chance of ever regaining her vision due to the damage that has been done to her brain. So it’s time to face the music and accept that our baby girl is now registered as severely sighted/blind and she’s going to need all the support we can give her.
The future is unknown the cyst is causing lots of other cognitive issues she’s started having reduced movement on one side of her body which is a more recent development since Christmas all due to the cyst blocking signals to her brain.
On the 16th of this month, we are back in LGI for another MRI, and we have another meeting with the neurosurgeon to decide how to go about removing the cyst if they can.We have been told to be prepared,
The risks are high and at some point, Ada is going to have no choice but to have the surgery as to when that will be we just don’t know at the moment.
Thankfully Ada is currently in no pain, she’s such a happy beautiful funny little thing with her own little daft personality full of smiles and love for food throughout all this she’s always smiled and giggled she’s none the wiser to what is going on. She’s just used to life in her little happy world.
On our side we are trying to remain positive for the girls and provide both of them with as close to normal going with all this going on as what we can. with the support of Ada’s visual impairment support worker health visiting team and hospital staff and family/friends etc. we just have to remain positive and pray for a brighter looking future.
So, if you’ve seen me or Drew wondering around like an utter zombies, acting vacant or I burst into tears on you which has happened a lot recently to lots of people then this is why. We’re doing our best it’s all we can do right now.
We just felt like it was the right time to open up face the music and take the daunting pressure of explaining it to everyone of our chest. I just simply can’t talk about it without crying.
Long as she’s happy, smiling and not in any pain that’s our motto right now.
Time to be strong and fight for our girl 
We made need some help if anyone knows of anyone who works within private medical, sonography or neurology / pediatrics and has any contacts retired or active who we could speak to privately we would really appreciate it.
A friend of ours insisted we should get a GoFundMe page going and to be honest I was unsure about it at first as I didn’t want to seek charity but if I am being honest, we are out of our depth and do need help. Any money raised would be a tremendous benefit going forward in terms of Ada’s options.
I want to thank everyone personally from the bottom of my heart who have already seen this and donated, it means a hell of alot!
Ada's Journey 