Our names are Natalie and Steven Ray.
We are married with 4 children; Lyle, Millie, Myla, and Lara - we are looking for some help for our little Myla (7).
On July 25th 2019, Myla took a seizure called a 'tonic-clonic" during her sleep, I still to this day do not know what possessed me to go and check on her when she first fell asleep, maybe motherly instinct but all I know is if I didn't she would not be here today. Myla was then taken to the hospital and put in an induced coma for roughly 24hrs (the longest hours of our lives). Our worst nightmare began!
At first, we did not know what was wrong with Myla as we had never experienced this before. All the relevant tests/scans/blood were done but nothing was shown. Naturally, we just thought this was a one-time thing.
9 weeks later Myla took another seizure (tonic-clonic) where we had to intervene and give her midazolam which relaxed the brain and allowed her to come out of the seizure herself. Everything resumed as normal again and all was fine. Until 5th December we had to call an ambulance as I woke up to Myla in another seizure during the night. We weren't sure how long she had been in the seizure but again by the time the ambulance got there, she was still in the seizure and had to intervene again with midazolam. Another stay in the hospital, but no coma thankfully.
At this point, it was then brought to our attention that it may be epilepsy.
They started Myla on medication and everything was good until March 2020.
We went away on holiday after I gave birth to her little sister - Lara. We went away to Aberdeen at the start of the covid outbreak, but the holiday was anything but joyous, it was our worst nightmare all over again. Within the month of march/April, Myla took over 700 seizures day/night. We were completely helpless and frightened as to why this was happening, as they still weren't sure what was causing them - it is hard to diagnose epilepsy without seeing it on an EEG. However, she stayed in the hospital for over a week, steven asked for further tests and was finally able to catch seizures on an EEG, therefore was able to make a diagnosis - Frontal Lobe Epilepsy.
Our little girl went right back to basics, this affected her massively- back in nappies, behaviour, memory, and her day-to-day life having to teach her basic skills.
Eventually, with the right medicines we were fortunate enough to get back on the right path, allowing Myla to get back to her usual self and live like a normal little girl. something we will never take for granted again.
Reading up on epilepsy we were positive in our thoughts, thinking Myla can grow out of it as it's quite common in younger children to then grow out of it.
Myla went on to live a normal life for several months. Then roughly every 6-9 weeks they had to intervene and increase medication as seizures crept back in adding more medication - again disrupting Myla's life as her body has to adjust which then has a knock-on effect on behaviour, moods, tiredness and even seizures until it balances out -it is not a quick fix.
2022 Myla went through more tests - MRI and brain EEG (24hr). It detected she was taking seizures in her sleep - we were none the wiser. This made us extremely paranoid, even more than before, as we always got up regularly to check on her through the night.
We thought everything was fine (result-wise) from May-October we heard nothing in regards to results, even though we had numerous phone call consultations with the epilepsy team. We can appreciate NHS is busy and is doing its best but we thought with the severity of it, it would have been brought to our attention sooner for this to be discussed moving forward, especially with the number of seizures Myla had throughout the year. I must state this is no hate intended on the NHS as I know they are doing their utter best and under great strain at the minute. I am so grateful to them for giving Myla the care she needed within that time. The epilepsy team are incredible but we feel there are not enough staff to support the number of patients they have.
However, our way of thinking was wrong. I was completely naive to the appointment and thought it was a standard routine appointment.
27th of October Myla was diagnosed with Cortical dysplasia type 2.
Myla is becoming drug intolerant and the only way moving forward is for Myla to have brain surgery to remove the abnormality in the frontal lobe of the brain. With this condition, Myla is more likely to have seizures in her sleep as well as going into 'status elepticus', which is a danger to life - Myla has had this twice already. They also made clear to us that she is at high risk of 'cot death'. Hence why we are going to try and go down the private sector to try and get this surgery sooner because of the severity of this situation.
Unknown to us but you are born with this condition and happens roughly from 15 weeks of pregnancy and nothing you do can prevent this from happening. Unfortunately, it has happened to us. As a parent, it's one of the hardest things to try and comprehend. We sat and looked into it thoroughly. I thought how is this possible that Myla was a perfect baby and didn't present herself with any medical issues; how was this not detected? however, with this condition, it is not detected until they are older.
We have been advised brain surgery is the best thing for Myla. The reality is that the seizures could end up taking her life, especially as the medication, one day, will have no effect. Myla is in the 20% bracket where medicine will never fully/control her seizures.
Unfortunately, since November, she has not been right. Myla takes what we call 'funny turns' - they are unexplained. we have taken her on numerous hospital trips and no outcome. Her quality of life is going downhill. She is now on more medication, has low thyroid, and has to have a wheelchair when in need of assistance - the funny turns come on like a flick of a switch. She is unable to walk, becomes very dizzy (she calls them ("busy eyes"), is very pale, sometimes slurs her words and then needs to sleep from 1-4 hours per day. When I say it's out of the blue, I mean we are at the shops, parties, and school literally, you can see the colour drain from her little face and her struggles to walk (her legs just go on her) or communicate.
We have had people commenting saying "aw she looks great in pictures on social media" if only this was the case but we all know social media can portray a different life than the one we live. We know though there is no hate intended when people say this. So please don't think we mean this rudely.
Since January 2023 Myla has not managed a full week at school. She has been unwell during the day from the description I mentioned above, plus taking between 30-50 seizures a day/night. The school have been incredible in assisting her, they treat her like they would their own children - Not a lot of schools, you can say this about.
They have helped massively not only Myla but her siblings and I. They are always there to help. We have a lot to be grateful for with Capshard and never will go unnoticed.
Our family have taken her to the hospital numerous times since November when these funny turn first began, but we get nowhere! They say she needs to be seen by her "specialists" but none are available and we are then discharged hours later with Myla being just the same, day in/day out. We do understand that they are busy, but when it is becoming part of your daily routine and your child is not getting a quality of life - it's heartbreaking. As a parent/carer/guardian - I hope you can agree. It is also a huge strain on our family, we have 3 other children to take care of also, but thankfully we have friends and family that help us, which we are extremely appreciative of.
The last few weeks they had a plan in place and this was not followed through on their end. We took her to the hospital as instructed but no further forward as no staff that specialises in her condition was available at this time. We phoned the Royal Sick Children's hospital in Edinburgh 3 days in a row, several times within a day even, to ask for some medical advice regarding Myla. We were told someone would call us back, but again we heard from no one. As a parent this is distressing, sometimes even to just have some reassurance that everything is ok. Our brains go over time, second-guessing, wondering what is wrong, why is this suddenly happening?
I am not even going to try and explain how we are feeling just now but I am sure you can all imagine and to be honest, no matter what I write won't emphasise the pain and how frightened we are for Myla. We are, however, being as positive as we can about the outcome for Her. We have been told it's roughly 50/60% of it fixing her and right now we will do everything we can for her. We have heard some positive outcomes about the surgery.
After giving our consent to surgery back in November, we have just been told Myla has not even been put on the waiting list - it's April next month! Steven and I have looked into going private to get her the surgery and care faster. To allow her to get her life back, to experience life the way she should at her age.
We have phoned around and realised the surgery that is required would need to be performed in London along with all the hospital appointments etc.
At this current stage we are unsure of the full amount of her treatment, with private care it's the number of stays/appointments/surgery type etc - this is a huge surgery. we are in talks with the team in London but at this current time, we need funding behind Myla in order to go ahead with the surgery and to find out the full amount. This will be down to appointments, surgeons etc. This is why we haven't written an exact amount.
We know this is a huge ask with the current climate but anything you can give is greatly appreciated from the bottom of our hearts.
If we are fortunate enough to raise this money, We will document our journey so you can see our highs and lows and show Myla's progress throughout.
We want to thank you in advance to anyone that messages us, donations, shares this post and even takes the time to read this.