Help Daisy to fight her dystonia caused by encephalitis

Hi lovely people,

 

Before sharing Daisy's story we like to give a little more information on Daisy's condition, which can stem from a virus associated with a common cold.

 

Many of you may not have heard of this virus called Encephalitis, as it only effects 10-15 people in 100,000 each year which make it a very rare virus but unfortunately Daisy was amongst these 10-15 people.

 

What is Encephalitis you ask? Follow the link to learn a little more

https://www.nhs.uk/conditions/encephalitis/

Survivors of encephalitis can be left with permanent problems such as fatigue, irritability, impaired concentration, seizures, hearing loss, memory loss, blindness and limited mobility.

Please also follow the link to find out about dystonia which daisy has now been left with for life due to the brain damage cause by the encephalitis

https://www.nhs.uk/conditions/dystonia/

Now I’m gonna share daisy’s story with you all which her strong mummy has sat down and wrote up amongst every thing that is going on “ so it started on Saturday 20th April 2024 my little girl was running round the park like her crazy little self, on the Sunday she wasn’t really herself napped early’ when she awoke from her nap she was sick.

She continued to sleep quite abit from then and She wasn’t really eating or drinking but as a parent I though it was part and parcel of a 24 hour sickness bug, on the Monday she was drinking plenty not really eating but I presumed she just didn’t fancy it where she was sick prior to this. Later that night she was sick again but she really struggled to bring it up again I presumed she hadn’t really eaten much so I though they had part to play as her stomach was empty, Then on the the Tuesday 23rd I still wasn’t happy as a parent I knew something wasn’t right at this point she wasn’t even drinking which was scary as I knew it wasn’t no 24 bug, I took her to my doctors where she looked her over and told me she was dehydrated and give me something to help, once we got home I still didn’t feel right and had a gut feeling it was something more serious as she couldn’t hold her own weight to even stand on her own I then took her straight to my local a&e where the poor little girl sat on my lap in the waiting room for 5 hours literally lifeless and unconscious, when we finally got into the cubical i explained everything that I had noticed in my daughter, the not eating or drinking, couldn’t walk, couldn’t take her self to the toilet & the left side of her body was a dam site weaker than her right i questioned the doctors asking if this could be anything to do with her brain as my dad suffered numerous strokes so I see first hand what that caused to his body. Daisy’s whole left side was paralysed and I was told there was an infection just had to work out from where, he looked into her throat and said he see a white spot on her tonsils and said she has tonsillitis and that was the reason why she wasn’t eating or drinking because she was in pain with it, we was told she had to drink 200ml of diarolight to get a blood gas test done as all her obs were fine so they said. She then managed to drink half of what she had to I was also told by the doctor while she was unconscious that if she didn’t drink the diarolight quicker we would be placed back into the waiting room but surly that should of showed a big red flag as she couldn’t even wake up to drink it let alone stay awake, they then checked the results and sent us on our way with antibiotics and a diflam spray to help the pain on her throat, which she had never ever once expressed that she was in pain with it . on the Wednesday she was still super poorly but I was just assured by 111 nhs that I needed to give it time for the antibiotics to kick in, she was still sleeping all day and waking for periods lasting all of 1-2 minutes.

On the thursday we was still so certain there was more things happening then what we had been told but yet again was told just to give it some more time to let the antibiotics kick in. Thursday come and went and I had this awful feeling there was something seriously wrong she was fighting herself to stay , Friday the 26th April I then took her back to hospital she was taken in by ambulance as she had deteriorated soooo bad at this point, we was looked after by an amazing senior nurse which new instantly there was something seriously wrong with my little girl, they moved us straight round to the paediatrics, when they looked at her we was told she was having seizures & they could see something was really wrong so they sent daisy for a CT scan, once this was done for her the doctor see instantly that she had a large amount of swelling on her brain, and they wanted to do another ct scan with contrast so they could tell if there was blocker or not, if there was they would of know if she was having a stroke if not it was an infection of some sort attacking her brain, it was at this point she was getting worse and worse and the doctor told us they was moving her into resus, when she got there there there was sooooo many doctor around her this is where I really really really didn’t think my daughter was in a good way, & was told at that point it’s not safe to keep her awake and they want to place her into an induced coma to keep her stabilised to be transferred to Great ormand street, as a parent you can imagine the hurt and pain I was feeling for my baby girl, sucha tiny little body going through sooo much we was then blue lighted to gosh where they took over her care and was then place into intensive care.

Daisy has now been at GOSH for quiet some time now, we spent the first week and abit on intensive care where she was in an induced coma and ventilated as they needed to manage her illness, eventually we left PICU and was taken to a neurology ward where she’s spent the rest of her time here she’s gone through so much in this time 3 mri’s & lumber punchers, a central line fitting into her neck directly to her heart to have a plasma exchange done and has been diagnosed with a rare condition from her brain injury called dystonia, still to this day my little girl cannot walk, talk or even eat and drink and is being fed through an NG tube into her stomach, there’s been numerous times where me and her dad didn’t even think she would make it her little tiny body going through so much but we are grateful that great ormand street hospital has given her the care she needs and deserves. It is still a very long road ahead of us yet we’re waiting to try and manage her dystonia more so we can go to a rehabilitation centre to help daisy try and gain the skills back that she has lost but there is no guarantee that she will but HOPE has got us this far and we will not be giving up on her, they have her on numerous medication to try help keep her comfy and not screaming and crying in pain but at the moment the only way of doing so is by sedating her so she is beginning to get more sleep with as in the beginning of our journey she was struggling some nights only having an hour or two sleep which would massively affect her and us as parents as we would be doing everything we could to try and settle her, this has been a massive shock to us all as a family as only one parent was allowed to stay with so having other children daisy’s dad had to travel to and from GOSH each weekend to be able to have us together as family and that has massively affected them too seeing their sister suffer the way she has been, we’re hoping one day we may get our little daisy-rae back before this awful condition took over her body. It’s still going to be very very hard to deal with in the future and she’s going to have to be in her wheelchair for quiet some time if not for the rest of her life and she’s going to need 24/7 care with her needs as she cannot communicate with us and numerous pieces of equipment to help cater for her needs. This little girl has touched so many hearts already on showing and proving everyone how strong she really is & I hope she continues to do so we was at GOSH from the 26th April and now finally on the 2nd July we were finally got transferred back to our local hospital until we can be transferred to tadsworth rehabilitation centre miracles do exists thank you for taking the time to read our journey so far xx

all money raised will go towards helping daisy on this new journey she will be taking she’s is going to need 24/7 around the clock care when returning home and help getting whatever she wants and needs to recover and to help give her the best future we can possible give her which includes days out as a family and anything she will need to adapt to her new life any little helps and is much appreciated