Saving Veda

I'm Christin, Mom to Veda. When Veda was born, Jericho and I thought we had our fairytale life. That this was the beginning of our happily ever after. We never expected that our entire world would turn upside down in a matter of years. And that one TikTok video would change our lives forever.

When Veda was born, she seemed like a completely normal baby, aside from some breathing issues right at birth. Those first days, weeks, and years were just bliss. Counting fingers and toes, and dreaming about our family’s future.

Veda is one of those “big personalities,” filled with vibrance and joy. She is always smiling and loves to be goofy. And, I’ll admit, she’s definitely Daddy’s little girl, through and through. She has this second sense for when it’s time for Jericho to come home from work and she always waits for him to arrive. As soon as he walks in the door, she’s running to him, giving him hugs and kisses. The two of them together are something special.

But Veda began falling behind in meeting some developmental milestones and we became concerned. Like every parent, we went to the pediatrician in search of answers for her delayed speech and chronic ear and upper respiratory infections. Sadly, we were met with repeated assurances of “She’s fine.” and “She’ll catch up,” from doctors, despite having a growing list of concerns. We had to push relentlessly to be referred to specialists. We spent months trekking to appointments with specialists, who ran test after test, but they didn’t have answers either.

My mother’s intuition was telling me there was something wrong, something causing all these concerning symptoms in Veda. Despite all the assurances from doctors, I knew there was something going on and I had to find the answer.

I never imagined what I was going to find and how I would find it. Especially since I wasn’t even looking.

One night, I’m scrolling TikTok in bed after Jericho had already fallen asleep. I see a video of a mom talking about her daughter, Haidyn, who looks like Veda’s twin. In the video Haidyn’s mom is talking about how Haidyn has a disease called Sanfilippo Syndrome and so many of the symptoms sounded like what we were seeing in Veda.The realization Sanfilippo Syndrome could be the reason for all Veda’s symptoms hit me like a punch.

I immediately Googled “Sanfilippo Syndrome” and, as I started to read, the world came crashing down.

Sanfilippo Syndrome is like Alzheimer’s, but in children. It is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years. It’s caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell, and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.

The fear racing through me was like nothing I had ever felt. I was so scared that I woke up Jericho, hoping he could convince me this couldn’t be true. We both prayed it wasn’t Sanfilippo. We couldn’t face the idea that our daughter has peaked in her development, that she would lose every single skill she’s ever gained, and that she will die in the coming years after years of extreme suffering.

In September 2022, genetic testing confirmed that Veda has Sanfilippo Syndrome. All those years of searching, begging doctors for help, and we finally had an answer. An answer that was worse than anything we could have ever imagined. We were completely crushed.

We spent the first few weeks after her diagnosis stricken with grief. But we decided we had to fight. We had to do our best, like any parent would, to save our child. We reached out to Cure Sanfilippo Foundation, for opportunities that might give Veda a chance.

But there is hope! A clinical trial for Sanfilippo Syndrome is in the preclinical stages (drug production, drug safety testing, efficacy testing, IND application process, etc.). With enough funding, this will become a clinical trial that begins treating multiple children. And we need it to start as soon as possible. Not just for Veda, but for all children with Sanfilippo.

It just needs funding, and a lot! Clinical trials for rare diseases are enormously expensive.

Large pharmaceutical companies often have little interest in rare diseases like Sanfilippo because there isn’t enough of a business incentive. Angel investors and federal grants are incredibly difficult to obtain. Which often leaves funding the research that could save our children to parent-led organizations like Cure Sanfilippo Foundation. Cure Sanfilippo Foundation works with the community of Sanfilippo families to rally kind-hearted people (like you!) willing to donate.

Your donation will help make the clinical trial happen!

Our goal is to raise $500,000 to help fund the clinical trial. Being part of a clinical trial will give Veda a chance at growing up, a chance at life. We can’t just sit back and accept that she’s going to fade away and die, not when there is something we can do to try to save her.

This is as urgent as it gets. It’s Veda’s only chance.

There is no guarantee Veda would be accepted into the trial. That decision is up to the clinicians running the trial. But it’s the only chance. We have to try. This is our only hope. And without funding for research and clinical trials, her future is certain: she will lose all of her abilities, suffer, and pass away, likely in her early teens. All right before our eyes.

We’ve had to let go of a lot of dreams, of things we thought our future held. We have one dream now, one desperate hope: Saving Veda.

Please, please help save our daughter.

There are three things we’re asking you to do. A campaign like this can grow quickly with your support. You are the key!

Please help us give Veda a chance at life. It has to be now.

Our deepest thanks. We are so moved and humbled by your support,

Christin, Jericho, Elise (Veda’s older sister), and Veda

Follow the latest:

-- TikTok: Veda's TikTok

-- Instagram: https://www.instagram.com/savingveda

-- Facebook: https://www.facebook.com/SavingVeda

Donations can be tax-deductible.

Other ways to donate:

-- Donate via Venmo, PayPal, digital wallet, and ACH on this site. Simply click the “Donate” button and choose your preferred payment method at the bottom of the page.

-- www.CureSanfilippoFoundation.org (click “Donate” and put “Saving Veda” in the dedication)

-- By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Include “Saving Veda” in the memo.

-- By stock gift, click Contact below and we can provide details.

Special thanks to the artists, who graciously dedicated their time and talent:

Video footage by Eva Philippe Petit and Quinn Michael Reeder

Video editing by Benjamin Von Wong

Photography by J Blanch Photography Inc, Benjamin Von Wong, and Amanda Joann Photography

Original music by KeithTim Anderson

Audio mastering by Andrew Kesler

***A special note of thanks***

We want to thank Haidyn, her mom Carrie, and her entire family for helping bring us to diagnosis earlier, for sharing their story on social media, and for choosing to be a part of this video and campaign. We love their family! Their courage is inspiring to us and to so many!

Information for the media: www.CureSanfilippoFoundation.org/SavingVeda

- - - - - - - - - - - - - - - - - - - - - - - - - - - -

A MESSAGE FROM CARRIE FOWLER, HAIDYN’S MOM

I support this project and want to see it succeed because it’s the only hope our children have. The only hope is to continue to push to fund clinical trials. Because without the trials, we don’t have a chance. We know that they could fail, they may not show the results hoped for, and they cost a ton of money. But if there’s a potential to save children’s lives, even a small number, in the Sanfilippo community, these innocent children deserve a chance.

I speak for myself and, I think, every other parent in the Sanfilippo community that our hearts break every time there is another child diagnosed with Sanfilippo Syndrome. Because we know what they are facing, what their future looks like, and that they’ve entered this world and nothing is ever going to be the same again.

This is why we really need to keep pushing to make clinical trials happen. To even, at least, find a treatment to make life just a little more comfortable for these children.

Part of Haidyn’s legacy will be saving other children. I want her story to be remembered, a child who led to further innovation in finding treatments and cure because we put her story out there. We put a lot of our own vulnerabilities and our realities out there in honor of her. Because we promised her that we would do everything we could to change the world for children like her, even if we weren’t able to save her.

- - - - - - - - - - - - - - - - - - - - - - - - - - - -

WHERE IS YOUR MONEY GOING?

Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization which funds research that can lead to a clinical trial for Sanfilippo Syndrome that could give Veda a chance at life. Donations are tax deductible. 100% of the funds raised here will go toward this clinical trial project. We are currently racing against time to fund this potentially life-saving new treatment. It could help Veda and so many other children have a chance at life, today and for generations to come. ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation to continue funding the clinical trial costs and other research to help children. ***

WHY SO MUCH MONEY?

Getting a clinical trial up and running can cost millions of dollars. In rare diseases, large pharmaceutical companies often have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents, patient-led organizations, and donors to drive and fund the research for treatments and a cure. This will help fund a clinical trial that can possibly help Veda and other children with Sanfilippo. Raising this amount of money may seem daunting, but it has been done before and research and clinical trials have happened as a result. It can for Veda too.

TIME IS OF THE ESSENCE

Sanfilippo Syndrome causes children’s cognitive and physical abilities to be completely taken away quickly once they begin regressing. In time, children regress back to an infantile state, likely never to return. This rapidly-progressive neurodegenerative disease will soon start taking over completely. Veda is 4 years old. We don't want to lose our daughter. This must happen now, and thank you for your compassion and generosity.