Isabela was born on the 22nd of April 2014. She is a beautiful and happy child as she just started exploring the world surrounding her, always smiling and singing, growing up fast and making us, her parents and family proud with every single gesture. We started building our world together and countless dreams and plans came to an abrupt end the moment Isa started having seizures at the age of 3.
We will never forget 01.08.2018 as the worst day of our lives, as her genetic tests results came back. She has a very rare and extremely aggressive genetic disease called Neuronal Ceroid Lipofuscinoses, CNL2 or NCL also known as the Batten disease.
You can easily find a lot more in depth information on this affection by searching on google or on this link: CNL2 , Batten disease.
It takes a few years for this disease to reach the final end, not before taking away the sight, speech, movement and all cognitive functions.
Pictures and videos of Isabela from the past tell us a beautiful and painful story of what we had and where we are now. However we feel we are truly blessed as she keeps surprising us on a daily basis.
Batten disease steals your child one day at a time and the only way we can delay this by giving their tiny body the enzime that she is lacking…This will be a lifetime treatment or until genetic therapy will be available, in hopes that it will be a cure we so desperatly need. So here we are…We have given up our life in Romania, our dreams of a normal life and we moved to Hamburg where the treatment is available.
We want to make Isabela story public and we hope to bring awarness to this rare disease… Batten or CNL2 was never known to us before this happened and while we hope no child will ever be diagnosed with this disease we pray that information is available for everyone to see and hear.
We love you our darling girl and in 20 years you will read this page dedicated to you in order to inspire other people to be the greatest they can be.
Our aim is to find a cure this disease once and for good and make sure no child will ever suffer from Batten. There are worldwide organisations that support finding a cure and we as simple parents want to play a role in this.
Every single cent will make a difference to our cause and we hope no child will ever suffer.
“I believe the children are our future
Teach them well
And let them lead the way
Show them all the beauty
They possess inside
Give them a sense of pride
To make it easier
Let the children’s laughter
Remind us how we used to be”
Or by bank transfer into the following account:
RO34 RZBR 0000 0600 0964 0708
or only Euro Account
RO70 RZBR 0000 0600 2038 6884
Name: Diana Belean
Help spread the word!