It's ironic that this discussion started recently as I received an email the other day about a young girl from Germany who is very ill with a rare disease. There's a petition associated with this. For now, I decided not to sign the petition because of Germany's history against the Jewish people. But in a situation like this, I'm not sure what the best course of action is. It's realistically possible that this young girl and / or others that can be saved aren't from anti-Semitic families. Any thoughts on this would be appreciated:
https://www.change.org/p/help-save-our-daughter-hannah?utm_source=action_alert&utm_medium=email&utm_campaign=318765&alert_id=ooukOYsiMD_VG4z7fX0Gba%2Fp7oAS1vU7CMd20D4y%2FyrK2MV6egjSRraI%2FR3M4oPsK3bdOV01X3IPetitioning BioMarin Pharmaceutical and 4 others
Please Help Save Our Daughter #SaveHannah
Our daughter Hannah is 9 years old and suffers from a deadly disease. In February my husband Michael and I received her diagnosis for the neurodegenerative disorder called NCL2. Since then we have been living with that terrifying feeling that she might pass away soon.
This disease is merciless. It starts off with growing visual impairments until there is a complete loss of sight. After that, those affected with this disorder will struggle with hallucinations, epilepsy and dementia. Our daughter will soon be losing all of her cognitive and motor abilities.
Any form of NCL is inevitably deadly - but there is hope for Hannah: The US pharmaceutical company BioMarin has developed a drug called BMN 190 "Cerliponase Alfa" which at this stage is being tested in a worldwide trial. So far, children who have been testing this medication haven't experienced any deteriorating health conditions, and some of them even experienced some positive development!
However, this medical trial is closed now. Which means that Hannah can’t get the treatment, as the drug isn’t expected to be approved for 1-3 years. That’s too late for Hannah. She could lose her life by then! This is why we need you!
Please join our fight for Hannah. Let's get her the chance to test the medication in an individualized trial. Every single signature increases the chances that BioMarin is going to help us!
Thank you so much! More information can be found on our website:
www.hannahs-hoffnung.de.