Skye's Dream Fund

We are hoping to raise money & awareness for our beautiful little girl Skye-summer Warren. 

Skye is Just 4 years old & was born a  beautiful, healthy, happy baby. To us she was perfect. Unfortunately when skye was just 2 years old she became seriously poorly on the 24th November 2014 our lives changed within a matter of minutes & was turned upside down. (I'll never forget the shock of how quickly life can change) Skye went from a bubbly, happy & healthy 2 year old that could Eat, Speak, Walk, Run & cope with all daily activities such as helping to bath her self, brush hair, clean her teeth, wash her hands which she loved doing , She knew most colours, could count to 10 & sing nursery rhymes & also happy birthday. She would tell you what she wanted and was very playful & very loving. She attended a play group each week and we would take her to a play centre with friends one day every week which she loved Skye then became really sick/poorly suffering sickness/ bad headaches/migraines, behavioural issues where she would attack out, loss of her speech, loss of how to swallow, loss of movement & everyday activities became a struggle for our little girl. Upon the loss of Skye's speech, Movement & swallowing Skye was then admitted Into Russells hall hospital they begun doing tests she had Mri scans, blood tests, E.E.G Brain Scans, Lumber Punctures & many more. All skyes tests got sent between Russells Hall, Birmingham Children's Hospital & Oxford. We was told it could be weeks before the results came back so the Nervous wait begun. Skye was still hospitalised, CHRISTMAS EVE we was gave news no parent should ever have to hear our little girl had 2 white shadows on her brain & possibly leukodystrophy disease as Skye was deteriating quite quickly the outcome wasn't looking good for skye but they was still awaiting all other tests to come back so until they was back they couldn't say a lot more, Later that night skye was then allowed home to spend Christmas day with all her family but as she was so poorly was soon admitted back into hospital.

JANUARY 2015
We was transferred from Russells hall hospital to Birmingham children's hospital so skye could be carefully monitored by the top neurologist  doctor & her team. The rest of Skye's results then starting to come back I didn't know how to feel part of me felt relived so we could find out exactly what was going on but the other part of me felt terrified. Just as we thought our hearts couldn't break anymore they did Skye was diagnosed with a RARE auto immune diesease ~ NMDA Receptor Encephalitis along with the shadows on her brain.
 Skye was started on emergency treatment straight away, she went through 3 treatments that unfortunately failed to work, she started on a high dose of steriods, high dose of Immunogoblins & other different medications/treatments to try to suppress her immune system to try and stop it from attacking out at her own body which also failed. She was then took to theatre to have a main Heomocath line put through her main artery & heart which went in just below her neck & come out just above her chest. Skye then underwent plasma & blood exchange treatment which lasted between 4-6 weeks for 5 days a week for the first 3 weeks then she was weaned down slowly for the duration of time. Our little girl now needs 24 hour care.

FEBRUARY 2015
On Tuesday 10.02.2015 we received more results of Skyes tests that were sent away to Oxford to be told more bad news that skye not only has 1 form of NMDA Receptor Encephalitis  She has 2 different cases of it. It is very rare to have one but to have 2 is even more rare. We was then told Skye will be starting some new medications once she had finished blood & plasma exchange the new medications will be to suppress her immune system for life. which we was all hoping wouldn't have to happen. Skye was NG tube fed for just over 8 months she currently still has her NG tube in for days she doesnt eat or drink & also for her treatment to go through. we was hoping that the plasma exchange would make a difference so we  Could start planning skyes Journey to recovery. After spending a full 6 months in hospital, completing 4 treatments, operations, medications, treatments & a rutiximab infusion skye was finally allowed home. We went home and started adapting to our new life styles. Skye needed 24 hour care & still does. Within 2 weeks of being home unfortunately skye was rushed back into hospital due to going into a relapse. She was started back on emergency steriods & Immunogoblins after finishing the course of treatments we was then allowed back home again.

Skye is currently at home but Spends a lot of time in & out of hospital due to always being poorly, Some weeks she  has upto 3 hospital appointments a week & a number of home visits form professionals involved in her care. she is  currently on treatment twice a day to suppress her immune system, medication to help with her behaviour as she gets quite aggressive at times which is through no fault of her own & can fit in her brain up to every 20 minutes, her illness has also caused her to have sleep disorder so she is on a high dose of sleeping medication. Every time skye gets a high temperature, feels unwell, Gets poorly or cold & cough ect..she goes in to a mini relapse where she can lose her speech, Movement & swallowing. Skye goes into mini relapses anything between 3-5 times a week, she is also expected to hit a big relapse within every 12 - 18 months and lose everything again. Skye has regained around 60/70% of movement, speech & swallow back but it drops as she goes into relapses. she also sufferes pain on a daily basis in her legs, feet, arms & other parts. Skye struggles to settle most days. The future for skye is unknown & only skyes body will fight what it can. Skye's days are so unpredictable as it's how ever her brain is reacting on that day.  Living life on a daily basis is the most horrific & heart breaking experience ever. It puts everything into prospective so living life & making memories as a family is so important & special. I urge people to never take life for granted you never kno when it could change. Even though skye will never make a full recovery.we will continue to fight this battle together with the biggest smile on our faces. We hope to raise as much awareness to such a rare illness if we could help just one person it would be a great achievement.  

The images I have uploaded are of Skye when she was well & some of her through her journey.

"Inside I cry everyday to the world we smile'  no one should ever have to watch there Child suffer' 

We are hoping to raise funds to help buy specialised equipment & Make any adaptations that are needed along the way during Skye's Journey & to help us to help Skye have a more comfortable life and keep our princess smiling.

We are also hoping to be able to take Skye on a dream holiday to Disneyland and have special days out to make precious moments as a family (Once Skye is more settled) 
please only donate if your happy to.

We have made a journey page on Facebook which is updated daily & as & when we can. Please feel free to like & share on Facebook @  Skye's Inspiring Journey 'Skye's Dream Fund'

For the people that knew Skye would understand how much this has changed all our lives aswell as Skye's. People that also know us realise how much of a daily struggle we're going through to make sure Skye is kept comfortable whilst juggling her dad trying to work and time for our little boy. She is such a brave girl & a true fighter. She is inspiration to me her mom (Melanie, her dad (Harry), little brother (Taylor) all the family & friends & all people that new her. I would highly appreciate for no bad comments to be left on this page as it is purely to help Skye and raise awareness, We Me & Harry would like to thank all the family and friends for there help and support so far, for gifts that have been made & sent, for people that have held charity nights to raise money & also for everyone's love, prayers & hugs that we've had. we wouldn't be were we are now without you all we appreciate it so much.  

January 2016 
Skye is still unsettled and still our battle continues. We are now also awaiting a full assessment for autism as on a mini assessment skye was showing signs of being on the autistic spectrum. She's become sensitive to lights & loud noises. Skye suffers from hallucinations also.

PLEASE PLEASE share my donation & awarness page on..❤