Sabrina's Story living with a rare genetic disorder

At age 3, Sabrina Inoke is living with a rare genetic disorder called Cyclin-Dependent Kinase-like 5 (CDKL5), which causes difficult to control seizures and severe neurodevelopment impairment.
At age 2, Sabrina had over 5,000 seizures.
Caring for a child with a rare disorder is not easy, but Sabrina has blessed all of those around her. She is a constant reminder of how precious and valuable life is. There is not an exact life expectancy for Sabrina and there is currently no cure for CDKL5. Each day with Sabrina is treasured by her family and loved ones.

Sabrina started pre-school this year! Her parents want her to have as normal of a life as possible. Her nurse assists her in the classroom helping her to do all of the activities the other children are doing.

In order for Sabrina to attend school she needs many medical supplies and items to help her throughout the day.

Sabrina recently got her first pair of glasses. She is so classy!

Please keep scrolling down for more of Sabrina's story below:)

Proceeds from the MANA 5K will help to pay for Sabrina's medical supplies many of which are not fully covered by insurance. They will also help Sabrina's parents to seek medical advice at Children's Hospital Colorado, which has one of three clinics that specialize in CDKL5. Unfortunately, insurance will not cover doctors visits outside of the state of Utah, even though doctors in Utah are not familiar with her disorder.
The 5th Annual MANA 5K will be held on Saturday June 24, 2017 at Liberty Park.
The MANA 5K is dedicated to educating Native Hawaiian and Pacific Islanders in Utah about serious health issues directly affecting their population. These include high rates of heart disease, diabetes, and obesity. Maintaining our health is not only essential as individuals, but also for our families.

All proceeds from the 5K event will be donated to Sabrina Inoke and Salesi Toutai for use towards medical needs.

NHPI Health Information

Native Hawaiian and Pacific Islanders have the highest diabetes and obesity rates in the state of Utah.

The number of adult Native Hawaiian Pacific Islanders in Utah reporting no physical activity in the last month is rising at a much higher rate than that of the general Utah population. Lack of physical activity contributes to many health issues and further worsens the symptoms for those already diagnosed with these diseases.

Within a 10 year time span, NHPI reports of no physical activity are rising at a significantly fast rate.
In addition, tobacco use among Native Hawaiian and Pacific Islanders is on the rise in Utah. Smoking can further exacerbate these current health issues NHPI are already facing. Lengthen your breath of life by committing to be tobacco free! For free quit services visit

Ancient Native Hawaiian and Pacific Islander diet was 85% vegetarian. They were a very fit and active people. Eating healthy and exercising was a way of life. Though times have changed, we can honor our heritage by bringing these habits back to present day.

Making small and simple changes is a start that can lead to bigger changes later. The MANA 5K is a great opportunity to help assist you and your family with starting or continuing your fitness goals.

Whether it be training before the event or using this as a kick start to furthering your goals later, we encourage everyone to start moving more!

Please join us on Saturday June 24, 2017 at Liberty Park in Salt Lake City, as we walk or run for a better future for ourselves, our children, our family, and the Native Hawaiian and Pacific Islander people.

Register and/or make a donation online at

Questions about this event? Please email us at

Special Thanks to our Community Partners for the MANA 5K!

Molina Healthcare
Lengthen your breath of life! Stay tobacco Free!
University of Utah Health Plans
Utah Fitness Institute
Select Health
Waxing the City
Costa Vida
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