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A mother’s plea…
As a parent we want nothing more than to protect our children from harm and give them the best life we possibly can. Witnessing your child grow to be a healthy and happy individual is all a mother could ask for
If only it was all in our control.
Becoming a parent also forces you to accept the harsh reality that all of your love, hopes and desires for your child can’t protect them from life’s inevitable challenges. At best we can prepare them.
But what happens, when you don’t have time to prepare them? Or yourself, from a challenge so cruel and overwhelming you can’t fathom where to begin
That’s where we found ourselves the day our beautiful baby girl, Sloane, entered the world.
Unlike the births of her four siblings, the moment that Sloane was born our anticipated joy was replaced by something we never expected...fear.
The NICU was paged. “NICU” what’s wrong?”
My husband came to me before the nurse brought her over and what I didn’t realize in that moment, was that he was preparing me. I saw, in his own eyes, he was fighting his own fears to protect mine.
I was terrified. Something was clearly wrong but it would take days of agonizing uncertainty and seemingly endless tests on our baby to get anything resembling an answer.
Finally, we heard the words Sturge Weber Syndrome mentioned for the first time.
Against doctor’s orders, I did the first thing any parent would do. I googled it. It was devastating. “Glaucoma, seizures, developmental delays, cognitive impairment...progressive rare disease with NO CURE”
I couldn’t breathe. My mind was racing.
The shock subsided and we tried to get a handle on the situation. I did my best to stay positive. I allowed myself to believe we’d be spared the worst case scenarios.
(Sloane's EEG to monitor her seizure activity)
Then one merciless development after another hit...
BAM! She needs painful laser treatments for skin…
BAM!..Glaucoma in her right eye…
BAM! The scariest of all, scans revealed Brain Abnormalities..
Her facial skin. Her eye. Her brain. A nightmarish trifecta of Sturge Weber Syndrome conditions.
The anxiety was relentless, like a vice grip on my heart.
But life has to go on, especially with four other kids who still need their mommy. My husband and I found strength that we didn’t know we had. We managed to stabilize our lives around our new normal.
Then in August of 2019. A final, devastating blow was delivered.
That night at around 11pm Sloane woke up from her sleep and had a different stare in her eyes.
She stared up at me, barely able to keep her head up. She looked directly at me. I could sense the fear in her eyes, as if she was crying for help but couldn’t say it.
“Sloaney” we began to say louder and more frantically each time as we witnessed her slipping away. Finally she stopped responding. Her body limp on mine.
I can't describe what it feels like to watch your child slip away both physically and mentally, in your arms. The girl that was once holding me and looking to me for help was now limp and no longer responding.
We lay her on the floor, her eyes were twitching. She was seizing.
We called 911 while running through the house looking for our notes on what to do. It all escaped us. “Noooooo please get them here now, please help our daughter. They aren’t here yet” I kept saying to the 911 operator.
All while we could only just lay next to her, rubbing her face and letting her know we love her.
“Could hear us? Will she be ok? Digging asking the universe for strength. Hers and ours,.
She was officially diagnosed with Epilepsy as part of her syndrome.
Now here we are on Sloane’s third birthday. Mercifully Sloane recovered quickly from her first seizure and after being put on medication hasn’t had a seizure since. Though it is an ever present concern in my mind.
We’ve spent the last year coming to terms with the challenges we’ve been confronted with. I can deal with the delays, the struggle, hospital visits, the treatments...But I can’t and won’t stand idly by, a victim of circumstance.
We’re going to fight. Fight to give Sloane every chance to fulfill her potential. To live life on her own terms.
That is why we are here now. We’re going to find a way and forge our own new path. To help give Sloane and the thousands of children and families fighting for a chance at life.
And there is hope. In 2013 a landmark discovery was made in the fight against Sturge Weber Syndrome. Miraculously, researchers discovered the precise gene mutation (GNAQ) that is responsible for Sturge Weber Syndrome. It’s been described as finding a needle in a billion haystacks!
Armed with this knowledge, scientists and researchers are racing to develop models to recreate the condition and test potential cures. The groundbreaking potential of CRISPR gene editing technology gives us even more hope that a cure can be discovered.
It’s not a matter of IF, but WHEN. And the when is predicated completely on funding for research. The more that can be raised, the faster we find a cure.
That’s why today we are announcing the creation of The Big 7, a non-profit dedicated funding research to find a cure, to help manage and prevent epilepsy and give our children the fighting chance they deserve. We also will provide information and resources for parents and caregivers to arm them with every possible tool they will need in their battle with Sturge Weber Syndrome.
Why "The Big 7" foundation? Well, we call our family the Big 7. 7 big, 7 strong. We would not have been able to get through life's challenges without having our family by our side. Not only are we grateful for the amazing family we have been blessed with. But we also want to extend that same sense of togetherness. That feeling that we have you. We are here for you and we will fight with you and for you. Just like we have for each other.
It’s a daunting task. But we have the hope and the collective strength of an army of Sturge-Weber families in our corner. We will succeed.
This Go Fund Me is the kickstarter to help us bring The Big 7 Foundation to life. With this money we will create an official non-profit 501(c)3 organization that will allow us to accept tax exempt donations. Our first goal with the foundation will be to raise over $200K to continue research that will help manage or prevent some of the symptoms associated with Sturge Weber Syndrome, like epilepsy and give our children a fighting chance.
(Sloane's 2nd eye surgery)
Today, we ask you to help join this fight in whatever way you can. Every cent of your donation will help our children live the best life possible.
WHERE THE MONEY WILL GO
$2500 - legal fees to incorporate and register our foundation with the state as a 501 (c) 3.
$2000 - funding software
$1500- initial marketing material
$2000 - website design and annual set up fee/costs
$5000- grant writing
**any dollar amount raised above our initial goal will go directly into the Big 7 Foundation efforts.
"With your help, WE can do this!" - Love Sloane
To help get the word out, you can share the link to your Facebook Timeline!”
As a parent we want nothing more than to protect our children from harm and give them the best life we possibly can. Witnessing your child grow to be a healthy and happy individual is all a mother could ask for
If only it was all in our control.
Becoming a parent also forces you to accept the harsh reality that all of your love, hopes and desires for your child can’t protect them from life’s inevitable challenges. At best we can prepare them.
But what happens, when you don’t have time to prepare them? Or yourself, from a challenge so cruel and overwhelming you can’t fathom where to begin
That’s where we found ourselves the day our beautiful baby girl, Sloane, entered the world.
Unlike the births of her four siblings, the moment that Sloane was born our anticipated joy was replaced by something we never expected...fear.
The NICU was paged. “NICU” what’s wrong?”
My husband came to me before the nurse brought her over and what I didn’t realize in that moment, was that he was preparing me. I saw, in his own eyes, he was fighting his own fears to protect mine.
I was terrified. Something was clearly wrong but it would take days of agonizing uncertainty and seemingly endless tests on our baby to get anything resembling an answer.
Finally, we heard the words Sturge Weber Syndrome mentioned for the first time.
Against doctor’s orders, I did the first thing any parent would do. I googled it. It was devastating. “Glaucoma, seizures, developmental delays, cognitive impairment...progressive rare disease with NO CURE”
I couldn’t breathe. My mind was racing.
The shock subsided and we tried to get a handle on the situation. I did my best to stay positive. I allowed myself to believe we’d be spared the worst case scenarios.
(Sloane's EEG to monitor her seizure activity)Then one merciless development after another hit...
BAM! She needs painful laser treatments for skin…
BAM!..Glaucoma in her right eye…
BAM! The scariest of all, scans revealed Brain Abnormalities..
Her facial skin. Her eye. Her brain. A nightmarish trifecta of Sturge Weber Syndrome conditions.
The anxiety was relentless, like a vice grip on my heart.
But life has to go on, especially with four other kids who still need their mommy. My husband and I found strength that we didn’t know we had. We managed to stabilize our lives around our new normal.
Then in August of 2019. A final, devastating blow was delivered.
That night at around 11pm Sloane woke up from her sleep and had a different stare in her eyes.
She stared up at me, barely able to keep her head up. She looked directly at me. I could sense the fear in her eyes, as if she was crying for help but couldn’t say it.
“Sloaney” we began to say louder and more frantically each time as we witnessed her slipping away. Finally she stopped responding. Her body limp on mine.
I can't describe what it feels like to watch your child slip away both physically and mentally, in your arms. The girl that was once holding me and looking to me for help was now limp and no longer responding.
We lay her on the floor, her eyes were twitching. She was seizing.
We called 911 while running through the house looking for our notes on what to do. It all escaped us. “Noooooo please get them here now, please help our daughter. They aren’t here yet” I kept saying to the 911 operator.
All while we could only just lay next to her, rubbing her face and letting her know we love her.
“Could hear us? Will she be ok? Digging asking the universe for strength. Hers and ours,.
She was officially diagnosed with Epilepsy as part of her syndrome.
Now here we are on Sloane’s third birthday. Mercifully Sloane recovered quickly from her first seizure and after being put on medication hasn’t had a seizure since. Though it is an ever present concern in my mind.
We’ve spent the last year coming to terms with the challenges we’ve been confronted with. I can deal with the delays, the struggle, hospital visits, the treatments...But I can’t and won’t stand idly by, a victim of circumstance.
We’re going to fight. Fight to give Sloane every chance to fulfill her potential. To live life on her own terms.
That is why we are here now. We’re going to find a way and forge our own new path. To help give Sloane and the thousands of children and families fighting for a chance at life.
And there is hope. In 2013 a landmark discovery was made in the fight against Sturge Weber Syndrome. Miraculously, researchers discovered the precise gene mutation (GNAQ) that is responsible for Sturge Weber Syndrome. It’s been described as finding a needle in a billion haystacks!
Armed with this knowledge, scientists and researchers are racing to develop models to recreate the condition and test potential cures. The groundbreaking potential of CRISPR gene editing technology gives us even more hope that a cure can be discovered.
It’s not a matter of IF, but WHEN. And the when is predicated completely on funding for research. The more that can be raised, the faster we find a cure.
That’s why today we are announcing the creation of The Big 7, a non-profit dedicated funding research to find a cure, to help manage and prevent epilepsy and give our children the fighting chance they deserve. We also will provide information and resources for parents and caregivers to arm them with every possible tool they will need in their battle with Sturge Weber Syndrome.
Why "The Big 7" foundation? Well, we call our family the Big 7. 7 big, 7 strong. We would not have been able to get through life's challenges without having our family by our side. Not only are we grateful for the amazing family we have been blessed with. But we also want to extend that same sense of togetherness. That feeling that we have you. We are here for you and we will fight with you and for you. Just like we have for each other.
It’s a daunting task. But we have the hope and the collective strength of an army of Sturge-Weber families in our corner. We will succeed.
This Go Fund Me is the kickstarter to help us bring The Big 7 Foundation to life. With this money we will create an official non-profit 501(c)3 organization that will allow us to accept tax exempt donations. Our first goal with the foundation will be to raise over $200K to continue research that will help manage or prevent some of the symptoms associated with Sturge Weber Syndrome, like epilepsy and give our children a fighting chance.
(Sloane's 2nd eye surgery)Today, we ask you to help join this fight in whatever way you can. Every cent of your donation will help our children live the best life possible.
WHERE THE MONEY WILL GO
$2500 - legal fees to incorporate and register our foundation with the state as a 501 (c) 3.
$2000 - funding software
$1500- initial marketing material
$2000 - website design and annual set up fee/costs
$5000- grant writing
**any dollar amount raised above our initial goal will go directly into the Big 7 Foundation efforts.
"With your help, WE can do this!" - Love Sloane
To help get the word out, you can share the link to your Facebook Timeline!”