Imagine once being able to see the world but slowly that sight was ripped away from you plunging you into total darkness.
Imagine the fear and confusion you would feel not understanding what was happening, being powerless to stop the darkness from creeping in.
Now imagine being only seven years old and this happening, imagine no longer being able
to see your toys, your family and friends or thefaces of your mummy and daddy.
This is what happened to Ollie Carroll who is now nine years old.
Ollie has a ultra rare neurodegenerative condition called CNL2 Batten Disease.
CNL2 Batten Disease robs seemingly healthy children of their abilities one by one and causes uncontrollable seizures until ultimately taking their life.
Life expectancy is between six and twelve years.
Ollie who was once a happy, chatty active littleboy can now no longer walk, talk and is fed by a tube going directly into his stomach.
Thankfully Ollie has been receiving an enzymetherapy treatment at Great Ormond Street Hospital in London for the past three years on the grounds of compassionate use which has improved his quality of life dramatically.
This treatment has shown evidence in slowing down the progression of the disease but sadly it is not a cure.
In September 2019 after a long battle which included us as individuals taking legal action against The National Institute for Health and Care Excellence (NICE) and NHS England this treatment was made available for all children with CNL2 Batten Disease in England.
Heartbreakingly, Ollie’s younger sister Amelia has also been diagnosed with the same devastating condition.
Thankfully Amelia was able to start the enzyme therapy treatment at a young age before the symptoms of disease took hold.
Being one of the youngest children in the world to receive this treatment Amelia’s future is unknown.
At the age of seven Amelia is still able
to walk, talk, eat and is now four years seizure free.
However this treatment does not prevent the loss of eye sight. It seems that the drug which is administered every other week by a four hour brain infusion does not get across the blood brain barrier.
Right now Amelia still has her sight but sadly time is not on her side.
We as Ollie and Amelia’s parents have been working tirelessly with professionals from Great Ormond Street Hospital. We have now been handed an opportunity via professionals who are now in a position to do a trial/compassionate use program on patients with CNL2 Batten Disease by administering enzyme therapy directly into the eye. If successful this treatment could slow or even prevent the loss of sight for children battling CNL2 battens disease.
As parents we were not able to save our sons eye sight and had to watch on powerless to stop Ollie from going blind. We have now been given a fighting chance to prevent the same happening to our beautiful little girl but sadly this comes at a cost.
It is estimated that £250000 will need to be raised to fund this project which will not only help Amelia but also other children with CNL2 Batten Disease in England.
We are appealing for your love and support as we are yet again faced with making the impossible happen.
We are so grateful to everyone who donates and by doing so you are becoming apart of something huge and will be helping to change the future of children with CNL2 Batten Disease.
We thank you from the bottom of our hearts.
In the unlikely event the trial does not go ahead for whatever reason funds will be donated to research/therapy/treatments for Batten Disease.
- Jennifer Lambert
- Lisa Inwood
- Helen Astil
- Janine Fletcher
- Lisa McNamara