Baby Has Rare Condition

A baby named Rupert has a rare condition. He was diagnosed with alternating hemiplegia of childhood (AHC) in January.

Rupert's parents first noticed something was wrong when he was two weeks old. His eyes would move from side to side and up and down.

Rupert had to be resuscitated when he was six months old. After that, his parents found out he had AHC. Now, he needs care all the time to manage his condition.

Rupert's condition is linked to other health problems like tremors and epilepsy.

At first, doctors thought Rupert was a healthy baby.

Rupert sees many doctors and nurses. His family is raising money to help him get treatment in the US.

Rupert's parents noticed he was having rigid episodes and eye movements. They thought it might be epilepsy, but the tests were normal.

The family was asked to film Rupert's seizures to help doctors understand his condition.

Rupert's parents are very tired and anxious. They are trying to take care of him and raise money for his treatment.

Rupert's condition has changed his family's life. They have to plan everything around his needs.

Rupert was born in May 2025. At first, he seemed healthy, but then his parents noticed his eye movements were not normal.

Rupert has had to be resuscitated twice.

Rupert's mom says they have to watch him all the time. They can't take their eyes off him because his condition is so unpredictable.

Rupert's condition is not caused by anything his parents did. It's just a mistake in his genes.

Rupert's seizures can be triggered by many things, like being tired or hungry.

Rupert's family has to be very careful. They can't let him get too excited or upset.

Rupert's eyes would move from side to side and up and down.

The family is raising money to help Rupert get treatment. They want to go to the US for help.

The family is hopeful that they can find a cure for Rupert's condition. They are looking at new treatments like Antisense Oligonucleotide (ASO) therapy.

Rupert has two brothers who love him very much.

Rupert's brothers are aware of his condition, but they don't know how serious it is.

Rupert's family loves him very much. They want to do everything they can to help him.

Rupert is a strong baby. He has already been through a lot in his short life.

Rupert will turn one year old at the end of May.

Rupert's family is going to a conference in Boston to learn more about his condition.

Many landmarks will light up in 'Rupert's Rainbow' to raise awareness for his condition.

Rupert's family is hopeful that they can find a treatment or cure for his condition soon.

Rupert's family is raising money to help him get the treatment he needs.

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