Sayyad Bacchus

Sayyad Bacchus's Fundraiser

Help me make a difference by supporting SKS research! image

Help me make a difference by supporting SKS research!

Join me and help make a difference, please give today.

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$470 towards $500

Currently SKS patients and their families face overwhelming day to day challenges as the overactive MTOR gene wreaks havoc on the body, including disrupting sleep and causing seizures. Imagine living with an unpredictable colicky newborn for years. Or feeling jetlagged every day. This is what life is like for SKS patients and their caregivers. The seizures and lack of sleep have negative impacts on cognition, health, and overall quality of life for people living with SKS.

Smith-Kingsmore Syndrome Foundation is working to change all of this.

As a lot of you may, or may not, know, my nephew Ezra is diagnosed with SKS. From his early symptoms, such as the light-colored swirls on his skin and his head's rapid growth, to his later challenges, such as seizures and low muscle tone, my sister Nazira, her husband Eric, and my strong niece Zara, have been through a lot.
It must have been stressful and frustrating for them when the initial tests and investigations did not provide any conclusive diagnosis. The process of getting a diagnosis was a long one, with multiple specialists involved and numerous tests conducted. His eventual diagnosis with Mosaic Smith-Kingsmore Syndrome finally provided some answers, although this is a very rare condition and there's still a lot unknown about it.
Their strength and resilience are apparent, especially considering their military lifestyle and the additional challenges this presents. Their commitment to understanding Ezra's condition, finding the best ways to support him, and advocating for research and awareness about SKS is inspiring.

Ezra's story is a testament to the importance of perseverance, advocacy, and community in addressing rare diseases.

Your contribution today will help the Smith-Kingsmore Syndrome Foundation drive science further towards treatments and a cure. I’m fundraising for the Sunniest Day of Hope Campaign so that SKSF can assist each patient and their family with sleep, seizures and many other debilitating life factors by supporting research that will lead to targeted treatments.

Your donation to the Smith-Kingsmore Syndrome Foundation is fully tax deductible and not only brings help toward a disease but provides overall support to this worldwide community.