Ice bucket challenge hits home for sisters living with rare form of ALS

Sienna, left, and Gisele Al-Shaikh each suffer from Juvenile Amyotrophic Lateral Sclerosis (JALS)....

Sienna, left, and Gisele Al-Shaikh each suffer from Juvenile Amyotrophic Lateral Sclerosis (JALS). (ERNEST DOROSZUK/QMI Agency)

Matt Ingram, Toronto Sun

, Last Updated: 9:18 AM ET

TORONTO -- The ALS ice bucket challenge has a special meaning for Markham’s Al-Shaikh family.

Gisele, 13, and Sienna, 8, suffer from an extremely rare form of ALS — juvenile amyotrophic lateral sclerosis (JALS).

“Its not common ... We’re told there’s only two cases in Canada and probably North America,” said their father, Noor.

Gisele and Sienna are the only known JALS cases in the country. JALS is so rare no one knows how many people suffer from the disease though the number is certainly low.

JALS is a form of motor neuron disease that affects a person’s ability to control their muscles. Typically, the disease makes the muscles tight, impacting mobility and speech as well as the ability to breath and swallow.

JALS is an early-onset of ALS which affects people under 25. There is no treatment or cure.

Unlike ALS, which can be fatal in adults in as little as two years, JALS patients have a much better chance of living with the disease for an extended period of time.

JALS is not rapidly progressive and symptoms tend to stay about the same over time, said Noor.

Many people are not aware that children can develop ALS and the Al-Shaikh family is hoping the spotlight generated by the ice bucket challenge will change that.


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(REUTERS/QMI AGENCY)


The family has embraced the challenge as a way to get people talking about the disease.

“It’s a great way to promote and educate people about the disease ... it’s an innovative way of broadcasting the message,” said Noor.

The family believes the fundraising campaign has captured the attention of people in a way that raises awareness while inspiring fun and community engagement.

“The ice bucket challenge is a fantastic, fun way to raise money for an organization and for a condition that’s really, sincerely life debilitating,” said the girls’ mother Rita.


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