Frost Family

10.23.2024

Annabel is 9 years old. She loves baby dolls, painting and riding her bike. But she has a rare neurological disorder called Alternating Hemiplegia of Childhood (AHC) which causes episodes of paralysis, limpness and an inability to respond normally to life around her. Children with AHC can experience these symptoms for hours or even days on end, with each episode causing possible irreversible brain damage.

Annabel is in a period of calm. She doesn't experience seizures, many of her symptoms have been stable over the last 6 months and she is able to attend a typical school. But everyday life is a struggle and children with AHC in similar periods of stability have died unexpectedly, some in their sleep, fueling her parents to fight day and night for a treatment to stop this disease in time for their daughter and the others like her around the world.

10.24.2024

In the Frost family, life revolves around Annabel. Her parents' time and energy go to caring for her and giving her the attention she needs, while at the same time fighting to fix her genetic condition. Her mother Nina stays up until 2am, putting in the hours to work toward a treatment, then wakes at 6am to get Annabel up and ready for school. 

But perhaps the hardest thing Nina and her husband Simon face is the guilt and sadness of giving so much of themselves to Annabel and worrying that there isn't enough to give to their older daughter, Clara. This same guilt weighed heavily on me every day as I carried Mila around the house, spoon fed her food and helped her go to the bathroom, with Azlan in the room next door, alone, playing with his toys. On top of the loneliness, Clara watched her grandmother decline and die of cancer, all while watching her sister have episodes and need rescue medicines. For Clara, growing up like her friends isn't an option. She's had to grow up quickly, worry that her sister is more important to her parents than she is, and live every day with the uncertainty of whether Annabel could die at any time.

10.29.2024

Despite, or perhaps because of, the struggles that Annabel faces every day, she has a unique ability to connect with people, often others who have lived through trauma or pain. An unspoken understanding. A gift of making people who cross paths with her feel good. She has brought these people into her life, into her family's life, and many of them have remained close. Perhaps Annabel found these people, or perhaps they found her. And what they share, often, is the perspective on life that can only come from difficulty and pain. And the appreciation of the little things in life that make everyone around her, especially her family, smile.

11.01.2024

When Annabel was a baby, she would have episodes of plegia where she would be paralyzed for days. Now, these episodes make her body limp, her words stuck and her response to life slowed down for hours on end. When she falls, her dad Simon is there to catch her. He tries to give her space so she feels independent, but he and his wife Nina live in a constant state of waiting for disaster to happen.  

Simon finds himself in a delicate place between survival - being ready to catch his daughter at any time - and proactively working with his wife and scientific team on treatments in a fight to save Annabel.