Parents raise money for daughter with rare incurable illness
A DEVASTATED mother and father have spoken of their mission to make every moment count for their terminally ill daughter.
Gail Rich and her daughter Nicole who has a rare incurable illness called Batten Disease
Gail and Matthew Rich say their "world will never be the same" after learning this month that their four-year-old child Nicole has a rare incurable illness called Batten Disease.
The cruel degenerative disease, which only affects one to three children in the UK each year, will eventually leave Nicole blind, unable to walk and eat.
Doctors have warned Mr Rich, 29, and his wife that their precious daughter is unlikely to live into her teens.
"There are simply no words to describe the moment you find out that you will outlive your child," Mrs Rich, 39, said.
"Harrowing, cruel, devastating, frightening do not even come close.
There are simply no words to describe the moment you find out that you will outlive your child
But the couple, from Throckley, are determined to give Nicole the best life they possibly can, and have planned a list of activities to make every second count before it is too late.
Her wish list includes a trip to Lapland to meet Santa, going on a zipwire, seeing Aladdin on stage and a visit to Disneyland Paris.
Mrs Rich said: "She loves horses so we would love to take her to a specialist horse therapy centre.
The cruel degenerative disease only affects one to three children in the UK each year
"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 deteriorate. We can't make her illness go away but we can create amazing moments for her, and special memories for us."
Nicole's health became a worry when she had not started speaking at the age of two.
At three she was diagnosed with global developmental delay, epilepsy and short stature.
An online fundraising page has already attracted £7,500 in donations
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.
Mrs Rich said: "Her unsteadiness became more noticeable at the start of the year when she was a little wobbly.
"But in the last few months this has dramatically declined to the point where she cannot walk a few steps without falling."
It was at this point that doctors carried out the blood test which led to the devastating diagnosis.
The family are fundraising to make Nicole's wish list a reality
The family, who also have six-year-old son, Louis, and one-year-old daughter, Jessica, are fundraising to make Nicole's wish list a reality, and to help support her as her health deteriorates.
An online fundraising page has already attracted £7,500 in donations.
Mrs Rich said: "We have been absolutely overwhelmed by the generosity of our local community, school, friends and family.
Nicole's wish list includes a trip to Lapland to meet Santa
"It is heartbreaking and we are fully aware of what we will be faced with in the future, but for now.
"We cannot allow ourselves to think of this and are just taking each day as it comes, cherishing seeing our beautiful happy daughter as she is now."
For more information visit their gofundme page