<div>Without your support, Sasha will never develop - she will be an infant trapped in a woman's body, severely disabled and needing 24/7 care for the rest of her life.
</div>
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<div><strong>Sasha's Story</strong>
</div>
<div>I'll never forget that moment our beautiful, perfect baby girl was placed on my chest - March 2017. I sobbed uncontrollably with joy. I felt so relieved she was healthy. <strong>That is all a parent ever wants to know: that their child is healthy.</strong> That relief was short-lived. What happened in the following years is indescribable.
</div>
<div><br />
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<div>We started noticing that Sasha wasn't developing like her peers. Until age 4, she was progressing - delayed, but progressing. But then she started going backwards. Whilst other parents celebrated milestones, <strong>Sasha was losing skills, not gaining them.</strong> Her insomnia was torture. She became incontinent, and stopped playing. Sasha's severe autism and involuntary movements increased in severity. She stopped speaking: just as she was beginning to find her voice, it was taken from her. <strong>She was slipping away from us. </strong>The struggle to survive day-by-day took over our lives.
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<div><strong>With time not on our side, we need to move fast now.</strong>
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<div><br />
</div>
<div><strong>The Diagnosis</strong>
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<div>In October 2023, at age 6½, we finally found out the reason for Sasha's severe regression. One of the rarest diseases on the planet. <strong>So rare it doesn't even have a name. “SLC6A1” said the doctor. “SLC6A-what”?? </strong>The doctors had never heard of it, and none of us knew the ramifications of this diagnosis. I was in disbelief when I was told there was no cure and no treatment. That dark place should never be visited by a parent. Insidious absence seizures - <strong>blank staring spells, hundreds a day - stole Sasha’s future</strong>, wiping from her memory the few words she had fought so hard to learn. Grief set in. <strong>Our entire world became research, learning about the disease and connecting with world-renowned scientists</strong>, <strong>searching for a way to give Sasha a future.</strong>
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<div><br />
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<div><strong>The Treatment - Precision Medicine</strong>
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<div><strong>A personalised therapeutic medicine is used to correct defective genes in order to treat a disease.</strong> Leading institutions in Australia have dedicated <strong>scientists ready to develop a genetic therapy for Sasha's specific mutation of SLC6A1. This means that Sasha has the chance at an independent future, able to talk, toilet herself and learn. </strong>Genetic therapy costs millions of dollars.
</div>
<div><br />
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<div><strong>Sasha The Pioneer</strong>
</div>
<div><strong>Your donation is part of a much bigger picture.</strong> Sasha has a splice site mutation (ie, a mutation that affects RNA splicing). 15%+ of all disease-causing mutations are splicing mutations! <strong>So when we show that Sasha's mutation can be fixed, that will pave the way to treating millions of people for all kinds of genetic diseases.</strong>
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<div><br />
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<div>David and I will contribute every penny we can but <strong>we need to raise alot more than we can afford for development of a gene therapy and safety testing.</strong>
</div>
<div><br />
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<div><strong>This is our only chance to help our daughter. </strong>We must fight for her, and we must move fast. Her future depends on it. I am facing the pain of seeing the person I care for most in the entire world deteriorating, so anything you can do to help, I will be eternally grateful for.
</div>
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<div><strong>David and I ask for your help today.</strong>
</div>
<div>We nearly have it in our grasp to save our special daughter from further disabilities and restore what she has lost.
</div>
<div><br />
</div>
<div><strong>Tax-Deductible giving options.</strong>
</div>
<div><strong>Australia:</strong> All tax-deductible donations should be made here: <a href="https://fundraising.epilepsyfoundation.org.au/slc6a1" target="_blank" rel="noreferrer noopener">The Epilepsy Foundation - Click Here</a>
</div>
<div>This is our official partner charity in Australia. Donations processed through The Epilepsy Foundation link go directly towards Sasha’s personalised ASO programme.
</div>
<div><br />
</div>
<div><strong>Where is my donation going? </strong>
</div>
<div>Your donations will be <strong>placed in a medical fund for Sasha.</strong> We have a dedicated bank account for Sasha. Donations will go towards<strong> a gene therapy to finally help Sasha </strong>and <strong>other medical expenses associated.</strong>
</div>
<div><br />
</div>
<div><strong>Your contribution to medical science</strong>
</div>
<div>The insights derived from Sasha's genetic therapy breakthroughs will be leveraged to aid numerous rare diseases. Your contribution extends far beyond Sasha; you're contributing to a broader effort that will alleviate the suffering of countless children worldwide.
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<div>_______________________________________
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<div><br />
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<div>YOU can help pave the way to curing childhood SLC6A1:
</div>
<ul>
<li>1) GIVE whatever you can. <strong>Every donation, no matter how big or small, is a blessing</strong>
</li>
<li>2) SHARE on social media (#SavingSasha)
</li>
<li>3) EMAIL &amp; POST this page - <a href="https://www.gofundme.com/savingsashaSLC6A1" target="_blank" rel="noreferrer noopener">www.gofundme.com/savingsashaSLC6A1</a> - to your family &amp; friends.
</li>
</ul>
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Anonymous

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Saving Sasha: Give Her a Future. Build a Pathway for Many.

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platform

Platform is iOS

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Active Fundraiser - Smart Default Cadence

DAF Internal

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Desktop users

Person ids

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Posters INTL

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iOS at or above 12.4.0

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Fundraiser Without Meta Link

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UC Tipping v20250115 International

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Platform is iOS v11.2.0 and above

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Android v11.0.0 and above

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Saving Sasha: Give Her a Future. Build a Pathway for Many.

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