After some months of tests we received the worst possible news that we have had in our lives.Hodei was diagnosed Batten CLN6, a neurodegenerative disease of rapid & terrible evolution, which currently has no cure. On this day, the sky came crashing down on our heads, & we entered into a deep, dark place. Not only for Hodei who had this terrible condition, but that there was a 25% chance that his little sister would have the same disease.
Hodei, Ilargi and Batten disease
Hodei
On October 19 2015 little Hodei arrived in our lives – a little premature; as if in a hurry to meet us. It was marvellous – we can still remember the enormous happiness we felt holding this precious little thing in our arms.
From a child Hodei was extremely energetic. He immediately began to crawl & soon after walk without any help from us. He had no problems of any sort – he ran, jumped & even swam from a very young age, & he loved playing with other kids. He explored the world with his beautiful blue eyes which would leave an impression on everyone he met, because his expression said everything.
Ilargi
On February 20 2018 our darling Ilargi arrived, who was another incredible gift. She was born underweight but was a delight, with such serenity. It was a joy to see how she loved us, among hugs & kisses. Ilargi grew normally, gradually becoming a little rebel. Like her older brother, she quickly learnt to crawl & walk & seemed unstoppable. She loved to run, play & dance….
The beginning of Hodei's illness.
When just two 2 a half years old, we began to notice that he was having difficulty speaking – he could hardly say four words. After consulting his pediatrician & other specialists, results seemed to point to nothing more than slow development, & that he’d shortly get on the right track. We accepted this, given that he could make himself understood with gestures & expressions.
During his fourth summer we noticed his increasing difficulty in running & jumping, & that he would fall more easily. Occasionally it would seem that he’d have a sudden muscle spasm. After consulting various specialists, tests were intensified. Among these, there was a specific genetic test in Valencia, after a similar test had shown nothing abnormal.
More bad news: Ilargi too.
Ilargi had to undergo the same tests, and the results couldn’t have been more devastating: she too had Batten CLN6. Her diagnosis seemed impossibly cruel, especially given that her development had been completely normal. She could speak, dress herself & at school she kept up with her classmates & her development couldn’t have been different than that of her brother Hodei.
After receiving such bad news, we fell further into the deep, dark well of despair, thinking of how impossible it would be to gather strength to be able to forge ahead.
For our two little ones, with their smiles, happiness, kisses & hugs which helped us to move forward, we are here: where life has more value than ever. They’ve made us change how we live our lives, living each day to the maximum.
Hodei & Ilargi continually teach us lessons about life with their tenderness & sensitivity; with their lust for life; picking themselves up each & every time they fall. They teach us to fight, & this is what we are doing. Together. FIGHTING TO INFINITY & BEYOND
The association.
Since receiving the diagnosis we have been in a process of assimilation & acceptance, searching for information about this illness, going from medical appointments & telephone calls with our neuropediatrician & his team. We have also been in contact with different associations & foundations in search of other families who are in a similar situation, because their are very few children in Spain with this illness.
Batten’s disease is considered ‘rare’ due to the low number of cases in the world. And as is the case with this type of illness, treatment is extremely costly, research almost non-existent, & affected families are in need of support & resources.
For this reason, for Hodei & Ilargi, for all the children suffering this terrible illness & their families, we decided to form this association. We are convinced that by coming together we can help to improve their quality of life, & above all try to find a cure wherever possible.
None of this process would be possible without the unconditional support we are receiving from our families, friends, neighbours, school, acquaintances & others who are helping us in a thousand different ways. We are deeply touched by this spirit of solidarity & we want to take this even further.
For Hodei. For Ilargi
The importance of your help
Why do we need you?
We need your help to fight this terrible disease in order to move forward on the path to a cure for affected children. We want a future for them.
Help us so we can help families living with Batten disease.
Help us make Batten disease visible. If we don’t see it, it seems that it doesn’t exist, and what doesn’t exist, is not investigated.
We want a future.
We want research.
We want quality of life.
Together, with your help, we will be closer to achieving it.
How can you help?
Any contribution, no matter how small, can make a difference. There are multiple ways you can help in the fight against Batten CLN6 disease.
- Make a direct donation by deposit, bank transfer or bizum.
- Buy or distribute any of our solidarity merchandising products.
- Spread our message on your social networks, job and so on.
- Collaborate taking part in the different tasks of the association.
Collaborate with us!
If you have any proposal or want to participate more actively, do not hesitate to contact us.
Join us! We need you!
