Isla-Rose has recently been diagnosed with Dravet Syndrome. Dravet Syndrome is a catastrophic neurological condition causing severe seizures alongside other conditions such as learning disability, ataxia and autism.
January 2015- The month Islas condition was confirmed upon genetic testing. Isla has suffered numerous prolonged status epilepticus seizures, A seizure in which we hope with all our might she pulls through and with every seizure brings a great risk of complications. Isla is currently in ICU at Kings College Hospital London, her 2nd stay in ICU in just a few months of the seizures occuring as well as numerous hospital stays at William Harvey Hospital Ashford.
Complications Isla has had to face so far in her little 9months of life is losing the ability to breath independantly during prolonged seizures. Her stay in ICU currently is by far the worst. After being admitted to our local hospital she was then transferred to Kings College due to the loss of function of one of her lungs. Whilst in ICU she developed another life threatening seizure which lasted 1hour 25 minutes. The Doctors started her on a drug specifically for Dravet Syndrome and her condition seems to have declined. Isla is now fighting the poor function of her liver, as well as the left side of her body being in a paralyzed state, this may be damage caused by the seizures, and a fact we are all aware may happen.
We do not know what the future holds for Isla, her quality of life is uncertain, but what we do know is that she needs the love and support from her family. Unfortunatley financially this can not be the case. Isla's daddy is self employed and is struggling to keep as a family unit whilst Isla remains in a critical condition.
So basically we want to raise donations for Isla and her parents to take the financial stress away who needs that stress when all your efforts are on your beautiful baby surviving the day?
48 hours ago we were told they had come to an end of treatment for Isla and there was nothing left. All we could do was put her into a deep coma and hope "resetting her" would help. It was the hardest time we have ever had. At one point the pharmacy came up to do a routine drug check, he saw Isla was on an IV Midazalam of 15. His face dropped. He told me in all his years or working he had never seen midazalam at 15. He said "I'm so sorry". That memory I'm sure will haunt me for years to come.
However, our daughter had other plans. She started reacting well to a new drug that was added and stopped having seizures.
Sunday 26th of July
Today emotionally I've not been strong. I think it was the arrival of two great friends that reminded me of the outside world we are missing. And having ped here with me makes me feel even more lost without her. It just doesnt feel right just the two of us. I see he misses her just as much as me and it breaks my heart. Today he fell asleep in a chair next to Isla holding her hand.
Its been a tough day for our little girl, no seizures but drug weaning. Unfortunately because of the amount of midazolam she was on and the length of time, her body is facing withdrawals from each reduction. Watching your baby shake as if she was freezing yet have a temperature of 38 and go so solid her legs don't touch the bed they are so straight is heart aching. We have been holding her hand and talking to her through it. Because of this they are trying to wean very slowly but help her through it with a little sleepy meds. Unfortunately each slight drop send a her into this shiver. It does settle when the sleepy drug kicks in but it's a tough time each time it starts. Hoping it won't send her into a full tonic clonic seizure.
It reminds me how hard this Dravet syndrome can be on our children and that you cannot expect anything or compare it to anything before.
Our daughter is strong.........she really is a Dravet warrior princess.
Monday 27th July
Unfortunately Isla suffered another seizure last night as her midazolam dropped to 0. 4. After a top up and putting it back to 0.5 she settled.
Withdrawals are settling with sleepy med but it's getting harder and longer. She's going to need physio and possibly more equipment ..walking etc. I can't bare to think that far ahead but we need to be prepared for what now lays ahead for Isla. The donations up to this point have been a life line, but unlike Islas condition, these won't last forever. We ask for ideas for upcoming fundraising events we can
plan to help Isla in her future life and what ever she may need to provide quality care and support.
Thank you every one, with your well wishes and support you've been such a big part of our journey, reading your comments are like a pick me up on a bad day.
We look forward to reading your fundraising ideas! xxx
This time I found it hard to stay calm. I got the job done the best I could but the image will haunt me forever.
2 plus hours intense fitting with 2 second gaps every now and again for her to take a deep breath before the horrible thing started again.
People ask how we do it.....honestly? I really don't know BUT what if your child was hurt? would you walk away, freeze, sit and cry or would you cuddle them and make them all better?
My bond with my daughter is stronger than anything I can describe and I will help her through this how ever "hard" I think it is for me / Daddy I will always remember it's 100 times harder for her.
Thank you to you all for your support you will never understand the strength a family gets from all your comments xxx
I sharedthis canpaign a year ago and it pipped up on my memories today - so glad you passed the target! I hope Isla is doing well!
Anonymous donation for £100 that has just been donated was from CK and Lorraine from the UAE who are thinking of you all and send their love