There was no treatment for their child’s rare condition. Now they’re trying to create one.

There was no treatment for their child’s rare condition. Now they’re trying to create one.
There was no treatment for their child’s rare condition. Now they’re trying to create one.
Annabelle is my three-and-a-half-year-old daughter. She is a wonderful happy, little kids, what’s diagnosed with epilepsy. After having one look like a seizure, make that our action plan went to neurologists with questions and nobody add-ons has so we asked them. For instance, how long is my dog – and I left – and I said I don’t know, and we said what are symptoms can look like if I said I didn’t know what is that daily life going to be like this head? I don’t know what options do we have in terms of drugs and therapies, and nobody knew when she was about 2 years old, though we finally were given the real diagnosis, alternating hemiplegia of childhood. Is this also called HC devastating neurological that combines symptoms of many of the other neurological diseases that people are familiar with, like epilepsy, like cerebral palsy like stroke, I just read papers, so it wasn’t a conscious decision to go down the path of doing anything about it. It was more less understand this disease and see what can be done. A patient with hcv can have these episodes of. We would call just weakness on one side or both and they develop where they just can’t move. On top of that, they can do very, very bad seizures and they can develop problems with sinking. We started our foundation, hope for and about to develop a cure for heart disease. Ours is a little bit different because my husband, Simon, has been so involved in cutting himself so deep into the science, and I think that’s one way in which we are a bit different. I think you know we have poured all of our efforts and every penny into a scientific project to develop a Navy, mutated gene therapy to cure and mouth disease. It seems like we could make a difference to any other diseases where parents wouldn’t have to reinvent the wheel. Every time they identified a rare disease read monogenic disease and their children. Jesus understand that rare disease allows you to take that treatment and expanded to a broader population who maybe don’t have that weird disease, but could benefit from impacting that particular area of the brain.
Nina and Simon Frost have invested $150,000 of their own money to research a cure for their daughter’s ultrarare genetic disorder. Read more: https://wapo.st/32sy4cO. Subscribe to The Washington Post on YouTube: https://wapo.st/2QOdcqK

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