An update from Angelina's mum
21 November 2024
Many of you know me as Angelina’s mother, Niki.
Two weeks ago, I reached out to Childhood Dementia Initiative to share a video update on Ange.
Two weeks ago, I reached out to Childhood Dementia Initiative to share a video update on Ange.
A video on Angelina that was published in 2021 has been viewed more than 7.7 million times on YouTube. I am so grateful for that because it showed me just how many people care about what our daughter and our family are going through.
I wish this was a message of how, despite the odds, things were better, but I must warn you it isn’t. We hope this doesn’t shock you. We hope that this doesn’t make you look away.
Since the age of 16, it has been harder, it has been gut-wrenching and I still sit here in disbelief that this can actually happen.
Angelina was a perfectly healthy child until the age of 14 and was great at school. At 15 she started showing symptoms of cognitive decline and was diagnosed with a terminal childhood dementia condition, Lafora Disease. She has since lost the ability to read, write, talk and eat. Most recently, the hardest one is she lost the ability to walk, which is devastating because she is now completely bedridden. Her body is failing her, she is in a cage, and it is extremely distressing. She just wants to be the girl that she was.
What I can say is that the unfairness of the progression, not knowing when a seizure flare might happen, not being able to stop it, seeing her in bed all day, seeing her in constant pain, makes us want to fight even more. It’s unacceptable that any child should go through this, or that any family is told to just make their child feel comfortable as you watch them die slowly.
For me, the worry is what consumes me. Every day, I don’t know if this is the day my daughter will die, and I can’t keep my mind off it. It’s so hard to see my daughter suffer and not be able to do anything about it. It has devastated my being.
We just want to see a cure. I want you to see this progression because I want you to get angry and I want you to act now so that this doesn’t happen again. We need help and we need you.
Here’s what you can do now:
Niki
I wish this was a message of how, despite the odds, things were better, but I must warn you it isn’t. We hope this doesn’t shock you. We hope that this doesn’t make you look away.
Since the age of 16, it has been harder, it has been gut-wrenching and I still sit here in disbelief that this can actually happen.
Angelina was a perfectly healthy child until the age of 14 and was great at school. At 15 she started showing symptoms of cognitive decline and was diagnosed with a terminal childhood dementia condition, Lafora Disease. She has since lost the ability to read, write, talk and eat. Most recently, the hardest one is she lost the ability to walk, which is devastating because she is now completely bedridden. Her body is failing her, she is in a cage, and it is extremely distressing. She just wants to be the girl that she was.
What I can say is that the unfairness of the progression, not knowing when a seizure flare might happen, not being able to stop it, seeing her in bed all day, seeing her in constant pain, makes us want to fight even more. It’s unacceptable that any child should go through this, or that any family is told to just make their child feel comfortable as you watch them die slowly.
For me, the worry is what consumes me. Every day, I don’t know if this is the day my daughter will die, and I can’t keep my mind off it. It’s so hard to see my daughter suffer and not be able to do anything about it. It has devastated my being.
We just want to see a cure. I want you to see this progression because I want you to get angry and I want you to act now so that this doesn’t happen again. We need help and we need you.
Here’s what you can do now:
Niki
