Nicole's fight against Battens

£31,687 of £30,000 goal

Raised by 519 people in 35 months
At the age of three years old our daughter Nicole was diagnosed with Global Developmental Delay, Epilepsy and short stature.

Within the same year, Nicole's development began to visibly decline, her seizures worsened, she became unsteady on her feet and needed support in drinking and feeding herself.

Doctors thought there was a connection to all of these conditions – over a year later, the link was found.

On Friday 16th September 2016 at four and a half years old our beautiful precious little Nicole was diagnosed with Batten Disease.

Batten Disease is an extremely rare fatal neurodegenerative condition for which there is currently no cure for.

Nicoles condition means that her unsteadiness will continue to get worse and eventually she will need a wheelchair. It will also mean that her ability to feed herself will also decline, as will her eyesight, most likely until she becomes blind.
Her Epilepsy has already worsened. The seizures will become more severe, aswell as more frequent.

Nicole sadly has never been able to speak, and now, we know, she never will.

It is expected that Nicole will not survive into her teens.

There are simply no words to describe the moment you find out that you will outlive your child.
Harrowing, cruel, devastating, frightening do not even come close.
Our world will never be the same.

But we are determined to give Nicole everything she could possibly dream of and more, her life may be short, but we will make it full to the brim with happiness, special adventures and the most love you could ever imagine.

Your kind generosity will help us enjoy every second as a family of five while we still can by taking her on trips of a lifetime. She loves horses so we would love to take her to a specialist horse therapy centre. Every childs dream of going to see Santa in Lapland.
Just simple things like a trip to London to go on the London Eye, she is a daredevil so she would love being up that high!
We want to do these things while we still can as we don't know how fast her condition will deteriarate. 

Please follow Nicole's batten journey on our Facebook page link is below
  https://www.facebook.com/nicolesbattenjourney/


It will help us care and support Nicole in the best possible way as her condition degenerates and create special moments together which will build memories that will last forever.

It will also help our ability to support Nicole as her needs increase. Our family home will need extensive alterations made to meet her mobility needs. This will include in the garden so Nicole can continue to play with her brother and sister on adapted play/swing equipment.

We have no other choice but to stay strong for our little girl and our two other beautiful children. When we are lying on our living room floor in despair, when we want to curl up in to a ball and give up, we know we just simply cannot. We have to keep strong, keep the faith and fight. There is no other choice.

Please help us to help our daughter, our beautiful Nicole.

We thank you from the bottom of our hearts.

We have added the link to the Batten Disease Family Association website if you would like to find out more about this disease.

www.bdfa-uk.org.uk
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We did it!!!!!

We have hit £30,000 in exactly 3 months!!!!
How do we even begin to thank you all.
This fund represents everyone's hard work, love & amazing support towards our family.
It is so much more than a monetary total.
We will never ever forget the efforts people have gone to in order to help our family.
To all of you who have organised events, cake sales, sponsored fitness challenges, raffles and every other brilliant fundraising idea & to everyone who got involved in these events, donated on-line & supported us, we thank you from the bottom of our hearts
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In just over 1 month this is what you have all helped us to achieve, we thank each and every person who has donated and supported us so far. We are half way to our goal with more donations to come, we are absolutely blown away by everyone's generosity and kindness thank you all so much for your continued support. We're nearly there let's keep going everyone #doingitforcoley
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Thank you each & everyone of you who have helped to reach this incredible point of nearly a third of our goal already!! We are extremely grateful
#doingitforcoley
Our gorgeous girl with her little Merida
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We continue to be amazed & very humbled by the generosity of people, some have never even met us, yet they are sending messages of support.
We cannot begin to thank you, it means the world to our family especially to Nicole
Please keep sharing
Our Enchanted Fairy at our photoshoot which was kindly donated by the wonderful kind hearted Joe Laws. These pictures are already so precious
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Read a Previous Update
Valerie Trayner
35 months ago
8
8

Hi Matthew, my name is Valerie. I have just read Nicole's story and I am so sorry there are no words. We too have just been given the news that our 7 year old has Battens disease. For now it's his vision that's effected but know what's to come. Would be great to meet/talk to others experiencing the same. Oodles luck on your fund and hope she gets the memories and time deserved xx

+ Read More
Jade Mcdonald
35 months ago
6
6

I would donate my life of it was to save this little girls. My auntie lost her little girl(my cousin) at the age ov 8 due to this nasty disease, I hope you raise a lot and are able to complete her bucket list. Xx

+ Read More
Wendy Lindsay
35 months ago
3
3

Hi Gail and Mathew I am so sorry to read the story about your beautiful little girl I also had a child with battens but she sadly pass away 6 years ago

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Frieda Zeidel
35 months ago
1
1

Two sisters that have Batten Disease have a foundation named the Charlotte & Gwenyth Grey Foundation http://www.curebatten.org/ Please be sure the family see this!

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Frieda Zeidel
35 months ago
1
1

I would love to send(donate) my childrens music CD, Songs From The Heart, to Nicole. Please private message me with a current mailing address and I will send one out to you. Here is my Facebook link and website, so you can see my CD and hear clips of the music on the website and see some of the children we have donated our Cd's to and read parents testimonials. God Bless Her. Frieda Zeidel Songs From The Heart https://www.facebook.com/SongsFromTheHeartbyFrieda songsfromtheheartbyfrieda.com

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£31,687 of £30,000 goal

Raised by 519 people in 35 months
Created September 21, 2016
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JW
£10
J P Ward
5 months ago
CB
£10
Clare Boyd
17 months ago
KH
£20
Kate Hammerton
17 months ago
JL
£100
James Link
18 months ago

We just saw your story about the brave sisters, Jessica and Nicole. We hope you have success. Our grandson, Garrett, has Batten Disease. (BattenFighter.com and on Facebook). We're in the US. It's too late for our Garrett for any treatment. The disease has already taken too much from him. So, here's a donation to help you folks a little. Thank you for spreading awareness of this horrible disease so we can achieve treatments and a cure. Garrett Coyne's Poppop.

PW
£50
Paul Wall
28 months ago

from big tom the gentle giant

CS
£10
Carol Stephenson
29 months ago
£50
Cáit Thorpe
29 months ago
1
1

Half the proceeds of the eBay sale of the rare Frankenstein red nose xx

JR
£80
Justin Ryan
30 months ago
DH
£20
David Heath
30 months ago
JB
£90
Jean Burn
30 months ago
Valerie Trayner
35 months ago
8
8

Hi Matthew, my name is Valerie. I have just read Nicole's story and I am so sorry there are no words. We too have just been given the news that our 7 year old has Battens disease. For now it's his vision that's effected but know what's to come. Would be great to meet/talk to others experiencing the same. Oodles luck on your fund and hope she gets the memories and time deserved xx

+ Read More
Jade Mcdonald
35 months ago
6
6

I would donate my life of it was to save this little girls. My auntie lost her little girl(my cousin) at the age ov 8 due to this nasty disease, I hope you raise a lot and are able to complete her bucket list. Xx

+ Read More
Wendy Lindsay
35 months ago
3
3

Hi Gail and Mathew I am so sorry to read the story about your beautiful little girl I also had a child with battens but she sadly pass away 6 years ago

+ Read More
Frieda Zeidel
35 months ago
1
1

Two sisters that have Batten Disease have a foundation named the Charlotte & Gwenyth Grey Foundation http://www.curebatten.org/ Please be sure the family see this!

+ Read More
Frieda Zeidel
35 months ago
1
1

I would love to send(donate) my childrens music CD, Songs From The Heart, to Nicole. Please private message me with a current mailing address and I will send one out to you. Here is my Facebook link and website, so you can see my CD and hear clips of the music on the website and see some of the children we have donated our Cd's to and read parents testimonials. God Bless Her. Frieda Zeidel Songs From The Heart https://www.facebook.com/SongsFromTheHeartbyFrieda songsfromtheheartbyfrieda.com

+ Read More
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