123
123
29

Help Darcee-Ella's battens journey

£9,271 of £3,000 goal

Raised by 138 people in 13 months
Thank you for your time. I'm trying to raise some money for my daughter Darcee Ella who is shortly going to be celebrating her 4th birthday.
Darcee Ella was born on time on the 30/8/2013. Every thing was perfect and she was such a smiley happy baby. When she was a few months old I realised she wasn't developing on target as she should be she was a lot more slower to reach any targets. shortly after her first birthday my concerns grew more about her not developing as she should. she never made a sound and gross and fine motor skills was severely delayed there was also a query over absent seizures intervention began to take place. A lot of medical professionals had ideas of autism like her brother or dyspraxia but no one was entirely sure so more tests took place over the years.
When Darcee Ella reached two she began to have seizures which involved lots of jerking and her complelty unaware these progressed over the weeks and came more and more frequent. MRI confirmed she has a malformation in her brain but we was unsure if the seizures was coming from the part in her brain that was malformed. Her seizures got worse and worse and no medication as of yet has taken any control over them. She has focal, focal with secondary generalisation, tonic clonic, drops, absent seizures and wears a helmet to protect her head. During the beginning of 2017 there have got so out of control she can have hundreds a day and getting a hour with no seizure activity is very rare she requires rescue medication every day and now oxygen during seizures as she becomes very grey.
In June we went as a instay at Leeds hospital to start the ketogenic diet. A diet which is lead by dieticians and the hospital which can help people with refractory drug resistant epilepsy. She became really poorly whilst there and a stay which should have been a few days ended up 3 weeks with more rescue meds and consultants seeing how bad her epilepsy is. She deteriorated rapidly regressing every day. My little princess who went into hospital walking unsteady and able to move around could no longer stand walk
Sit without support and no longer eat and drink she now is fed through a peg tube. Every one began to worry and more testing was done to determine what was wrong. Her eeg picked up constant spike waves over her whole brain her MRI was mentioned to have brain volume reduction and multiple blood tests was done. I was told they think she has a neuro degenerative disorder. Battens was mentioned but I was determined this wouldn't be right. Consultants visited at home over the weeks so I knew some thing was seriously wrong. On the 2nd August we was visited at home and was given the devastating news my gorgeous little girl has late infantile battens and her life was been taken away from her. Children which have this very rare disorder will only life until the ages of 6-12 years loose all skills and will loose their sight amoungst many other heart breaking things. I am looking to raise money for her for equipment she will need one is a more suitable wheelchair which will suit her when her body is stiff and provide amazing support and carry all her equipment- feed and feeding pump sats monitors suction machines oxygen etc. Also sensory equipment and for her to do many experiences and see so many things before her sight is taken away from her. Any thing would help. Thank you for reading and your support xxx
Hugs and kisses from Darcee Ella

+ Read More
Hello every one not updated in a while I have been running Darcee Ella a Facebook page which has been easier with every day updates which you can follow I’ll attach a link. Things have been a bit crazy since Reuben went back to school last month end up running at a thousand miles a hour trying to get every thing done and Darcee Ella sorted. Last week we had an amazing treat and was able to go away for a week and center parcs Sherwood Forest in the tree houses all thanks to make a wish who granted the wish for Darcee Ella to make special memories and spend lots of quality time together. The tree house was sooo good I have never stayed any where as nice as it was it was very luxurious and I would love to go again. Reuben enjoyed some time to him self in the games room and Darcee Ella loved the hot hub she could move around so much more easily the heat must have been good for her body we enjoyed hand casting which has been framed and can’t wait for it to go on the wall her hand print is so tiny and a special keepsake. Hair braids teddy bear making, pony pals where they did a great job adapting it so Darcee Ella could join in i managed to hold her safely on the horse and she had a little walk along she loved this and always wanted to take her before she deteriorated so quick she has always adored horses ! Reuben enjoyed a mat hatters tea party for one afternoon and we enjoyed swimming which wore Darcee Ella out so much she actually fell asleep in the pool
I’m just in the process of sorting out continuing care which is added help with Darcee Ella. I went to view sunshine house but was just a bit to hospital feel for me sadly and not what I was looking at for Darcee Ella. I haven’t been able to make up my mind so not looking into direct payments for some
One to come for a few hours around the rush times of the day and help with stuff like even getting Reuben to school and back. Hoping to swap her bed to a more suitable bed for her needs in the next week or so too which will be better as she doesn’t need a floor to celling bed any more. I have now also got a different car so I can wheel her in in her wheelchair and strap
It in which is so much better as it cuts down loads of moving and handelling and she wasn’t managing to support her self in car seats any more.
An amazing £320 was raised by Alison Blanchard-McKinley who did he great north run for Darcee Ella so a huge thank you to her
+ Read More
Continued.... appointments recently have including sorting out a plan of action for what ever happens so there is a plan of action for all medical professionals. In this plan we had to discuss what would happen if she collapsed right though to when the time comes that she passes away all of this was very upsetting but had to be done. Having to put my feelings aside and think of Darcee Ella's best interests. She has suffered enough over the years and with also having a learning disability etc she has no understanding . The decision had to be made with a do not resuscitate and treat this as a this is her bodies way of its tired worn out and battled on enough. Also not to intubate etc etc. Her little bodies been though enough and she has to keep some dignity with out suffering any more.

She's been suffering with light recently so her eye sight is defiantly deteriorating.


A year ago today she started her special school but sadly she is too poorly to be back today. She's slept none stop these past few days which is worrying and been hard to wake so will see how she goes.

Make a wish charity- ⭐️ our dream was to take Darcee Ella to Disney land Paris but she's not safe enough to fly or ferry and train wouldn't be suitable. This amazing charity are sending us to centre parcs next month in the tree houses which is very exciting she loves animals and will be a lovely calming holiday to relax and create special memories
A picture from a year ago 2016
Picture now
+ Read More
Hi every one just a quick update as haven't updated recently thank you to every one donations and those who donated and shared on her birthday. Her birthday ended up been disastrous we went to Knowsley safari park she has a big seizure on the motor way which resulted in me having to pull over on the side with big lorries zooming past until she was stable and the oxygen was working for her. By the time she got there she was so exhausted and had had enough she didn't enjoy any of it
Continued......
+ Read More
Hello every one! Today I turn 4 years old please share my page as far as it can go to make lots
Of awareness
+ Read More
Read a Previous Update

£9,271 of £3,000 goal

Raised by 138 people in 13 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
CS
£30
Chris Saunders
6 months ago
PB
£10
Peter Buckley
7 months ago
£50
Sally McIntosh
7 months ago
TC
£10
Teresa Coton
7 months ago
VM
£10
Vanessa Mclellan
7 months ago
SF
£10
Susan France
7 months ago
£15
Debbie Greenwood
7 months ago
£15
Maxine Scott
7 months ago
BS
£10
Baljinder Singh
7 months ago
DL
£40
Deana Lee
7 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a £5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.