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