Hope For Taylor & Stacey

Hope for Taylor & Stacey (Hope4TayNStay)  was created to give hope and help to a family in Northwest Ohio a better chance at helping their son and his mother who both suffer from uncontrolled Epilepsy (along with several other medical conditions , (some of which are in relation or contributed to by the Epilepsy). 

This family is in dire need of help of off-setting the costs of their CBD oil Seizure treatment regime as recommended and approved by their neurologist!


(Please see wish List at bottom of page)

Meet Taylor...

Taylor is a 18 year young man. He is special needs and functions at a level much lower than his peers. More like a 14 year old in comparison. He  was diagnosed with Epilepsy at age 2.
(Although, his parents knew some things just were not right when he was a baby),

THE EARLY YEARS OF EPILEPSY BEGIN....

No doctor would listen when they begged for testing, concerned over spells (which the doctors always said "They were just breath holding spells, nothing to worry about, all babies do it". This was accompanied by constant crying spells as if he was in pain and no amount of  feeding,  diaper changes, changing formula's, comforting, swaddling, rocking , love or anything would stop or even make him comfortable.
Still no one would listen, Until Taylor was discovered early one cold February morning (Feb. 18th 2002 to be exact) convulsing  and turning blue in his bed, when his mother went to get him up for the morning. Home alone with him and frantic no attempt she made would pull him out of what was happening.  His mother at the time had no clue as to what was happening to her precious little boy. 911 was quickly called. Taylor was still convulsing and not breathing.  (CPR was not known to mom at the time). 
Taylor remained in this state until paramedics arrived and were able to start bagging him at 100% (breathing for him), and began administering  heavy medications and fluids to try to stop the "Seizure", as the EMS staff called it.  Mom had to not only whitness this, try to handle this all on her own at the moment,  at the same time be questioned by police like some criminal. She had to watch what appeared to be her son die-ing and for a period of time he literally was.
By the time little 2 year old Taylor (at the time arrived to the hospital he was still seizing and not breathing on his own. He had to be intubated.  Things did not look good. Dad soon arrived at hospital to began the horror mom had been experiencing along with little Taylor. 

He managed  to be pulled thru it all and survive. His parents never left his side for a moment.

After countless intense tests were performed and Taylor had a week long stay in the children's unit of the hospital, closely monitored and started on anti-convulsant meds, they were then told by a neurologist at the hospital that their son had an abnormality on one side of his brain from the other and was diagnosed with temporal lobe Epilepsy.

Life from that point on changed for Taylor , his parents and brothers forever.  The younger years....life changes


Taylor has been through several doctors and neurologists over the coarse of his life and through more seizures than anyone could count at this point.
Seizures of all types:
Grand mal, partials, Absence seizures and others that were like spasms.
Some times the seizures could be controlled for a few hours, to a few days, occasionally a few months. At one point it was for several years. But when doctor's attempted to wean Taylor off medications, it all started up again and have never stopped since.

The seizures have been believed by neurologists, psyche docs etc. to be a contributing factor to some of Taylor's other diagnosesis over the years which have included  a learning disability, social issues, severe Depression, OCD, Autism, Anxiety,  and even ticks.

Taylor once was a happy child who laughed and smiled and had fun. 


He enjoyed life, and had fun... And even loved to listen to his older brother play guitar.


He's a trooper for sure. Epilepsy can be so hindering to one's life, and for a child and or teenager it's the worst. Everyone deserves a childhood, and many with this condition don't get a fair chance at one. Taylor never has, and that's devastating

He always has loved to swim!


Even through uncomfortable, painful, long miserable testing, he had a smile!



But happiness and joy and fun started to fade...


And has gradually, and almost completely disappeared over t
He was free of Grand mal siezures for several years , but never free from the other types. On May 9th 2015,  Taylor had his first breakthrough Grand mal siezure in 12 years.  Again, things were like the first time, and he was rushed to a local hospital then trasferred to a children's hospital in Toledo Ohio. 
(AGE 15)

This whole nightmare for Taylor and the family was starting all over again and getting worse.

At first it was thought to be a growth spurt , and he had just out grown his medication doses too quickly , despite the fact he see's his neurologist every 3 months, sometimes sooner than that.  But since that day, he has been having the grand mal siezures still as well as his other siezures. Medications (regardless of how high or low the does, regardless of medication changes, add ons etc.), nothing is controlling them.


This is Taylor's current daily medications (in both photos above) , seizure meds,  psyche meds, prescription strength vitamins for certain vitamin deficiencies caused from years of medication use and seizures. Including his rectal emergency seizure stopping medication, also anxiety meds, and even a muscle relaxer!

YES that's right... A muscle relaxer, because Taylor just last month was found to have a severe paraspinal muscle tear caused from the severity of the convulsions from the Grand mal seizure in May, that no one caught. Even after him complaining of extreme back pain in the hospital that next day after the bad seizure.

His neurologist, who is top notch and absolutely amazing, and works so hard to help Taylor, recently discovered a "Venous Angioma" on his brain during an MRI over the summer.
When he reviewed some older MRI images of Taylor's from when he had his first seizure when he was 2 years old, he discovered it, even on those images. He said it's the type that he was born with.
So why did no one else over the years even mention this?

He requires rectal Diazepam to stop the seizures if oil does not stop seizure. (which to better explain, is a tube of medication that is a little plunger tube that gets inserted into his rectum and injected to quickly enter his blood stream and stop the seizure). If the seizure alone doesn't cause him to lose bowel and bladder control , the medication does.
Now imagine your 18 and was to have this happen in a public place, example: a store, school, anywhere.  Pretty scary thought of it happening at all for sure. Embarrassing as can be for a 18 year old boy. He has recently been put on a pill form of this to see if it will work for him. He keeps it at school and home
Afterwards he's out for hours, sometimes until the next day.


This all still continues for him, despite efforts from doctors, specialists, parents, prayer, love and hope.

His parents have done extensive research on the use of CBD oil  ( a legal of CBD, that is legal in all 50 states and has been proven to drastically help reduce , control and even stop siezures. Even in some of the severest cases, that are 10 times worse than Taylor's case.
With this information in hand Taylor's parents took the evidence and hope to Taylor's current neurologist ,who has been seeing him for the past 4 plus years. He agreed  100% and thought it would be a good idea to try it.  As Taylor is out of mediciation options, and weather or not he would be a candidate for surgery is never going to be discussed. 
Taylor's parents are strictly against anyone cutting open their child's head and tampering with something so delicate, that one tiny slip could end his life.  You cannot simply just put a scaple to someone's brain and expect a parent to be ok with that.
 
Taylor was recently started on the CBD oil in 2015..
With Neurologist approval as well.
Mom started at same time, but had to wait until a follow up appointment to get her approval letter.

So the new journey began...
and it has actually been stopping every seizure without the use of the heavy duty Diazepam rectal gel to stop them.  And with absolutely NO side effects!  
The bottle we have to purchase is the size of a childrens tylenol bottle and  is a supply for one person. ..for 1 month!

It is manditory to keep the seizures and other issues under control and at bay. Taylor and mom have both shown great improvement in seizure control with the oil.Moods are better and it's stopped severeal seizures in
  NO Grand mal siezure's,And the same with mom. It's proven extremely effective in them both. ! I cannot express the magnitude of the positive impact these oils have had on their lives and seizure control!It's not only stopping Taylor's siezures, but HIS MOM'S too! Yes Taylor's mother also has uncontrolled Epilepsy, along with many other medical conditions (PHOTO...HOME BASED AMBULATORY EEG)

And those are not all of them!


MOM IN THE er AFTER A SEIZURE


ANOTHER HOME BASED AMBULATORY EEG
EEG TIME..

Misery loves company in this case (both 72 hour EEG's done at same time over Thanksgiving weekend.

72 hour EEG's during a holiday weekend isn't exactly a kosher cup of tea.

Taylor has inherited Epilepsy from both his mother and father's side of the family.   However, the family's main focus, regardless stays on helping Taylor get better and finding the root of the problem.

At this point in treatment, Taylor and mom are both out of options. The CBD has proved thus far to be working. Upcoming EEG testing on both of them will hopefully show on paper as well ,that the oil is helping.  

AND THAT THEY DID... LOOK!  
  THEY BOTH READ THE SAME ! NO SEIZURES!

Taylor's first day trying CBD oil

CBD oil helping is great, and wonderful news and a miracle to see happening for their son.

With that said, the oil comes with a heafty price tag 
For a family who is on a fixed income and shells out  so much money in gas each month to get to his neurologist appointments, tests, along with 2 other specialists who are all 3 out of town. Then to mom's appointments to the same neurologist and two other specialists for her. This family shells out more gas money in a month's time then the average family would in 3 months. 

They are willing to do anything they can to come up with funds for gas to appointments, tests, follow ups!

Taylor had surgery back in August 2015.
SURGERY SUCKS


and then  had another surgery for Taylor for some deep inner ear issues, on Feb. 16 , 2016


Now possibly another soon due to mastoid issues  and fluid building up behind eardrum and eardrum retracting causing pressure , hearing issues and more seizures.


The family all of them, try so hard to keep up with it all, but there is just never enough income to cover all the expenses. Especially gas.

To now have discovered something great that is starting to help Taylor's siezures and his mother's, but cannot afford the one bottle to cover Taylor and Mom both for the month, is like a double edge sword.
Great to have finally found something that is helping and working and is natural, and could hold hope of them both coming off siezure meds in the future if, it continues to work and help as it has been!

Downside to it, they lose again because expenses still pile up and gas is still an issue, let alone affording the CBD oil too, even for just Taylor. 

You then have the issue , that parents and doctors want further tests, but there are just some things insurance refuses to cover and doctor's won't order them if no coverage by insurance on them.
Nothing can be done about that, so questions continue.

Mom , Dad , and the doctors are still left to this very day scratching their heads with...
What is causing these seizures in this child to have suddenly changed, and what can we do now, when he is out of options?  And his mother too?

What do you tell a child?

What do you tell a family?
A family who ,not only is the child at the end of the line with treatment and control of the epilepsy, but so is someone who loves that child unconditionally and cares for him on a daily basis? His mother.
What do you tell a father?
A husband?

  Do you tell them "Sorry we cannot do anymore to help"?
Do you just keep pouring more medications that have already been tried and unsuccessful into their bodies?

And let the medication do nothing to help and continue to make them ill, debilitate them, and eventually damage their insides?
(Picture above, I know this seems gross), but this is an anti-convulsant that had to be dumped due to it causing unstoppable seizures in "Mom".

This is after 3 days in the toilet, despite numerous flushes. It was finally manually forced down by Taylor's dad , because the thought of what it could have been doing to her insides was just too much to think about.

Taylor was on that particular medication (Depakote) the longest of his young life.

Makes you wonder, and makes you think.
It's reality.  To think, before, there was plastic lettering, yes... "PLASTIC" lettering from these pills floating in the water. You are not supposed to flush medication , but this was done to prove a point.

SO...
What do you tell this family, this child, this mother, this father, this husband?

Do you tell them to give up? 

NEVER, ABSOLUTELY NOT, UNACCEPTABLE!

To hell with giving up!
Let's give help and hope to a family who is slowly losing hope for ever finding a cure, let alone living  a normal or seizure free life.

Their life consists of"

What happens next?

Will we be able to have enough gas money to make it to our next appointment/test?

Will there even be a way possible to make it to "X" number of specialist appointments THIS month or NEXT month?

How are we going to work the CBD oil into our budget, a budget that doesn't cover all of the above to begin with?

Hard enough for families these days to keep food on the table, and this family, (and many more like them) struggle with way more than that each day. They struggle to literally "Stay Alive" and keep their family members who are ill alive. 


Please open your heart and give Taylor and Stacey Hope.  Hope4TayNstay.


Wouldn't it be fantastic to see them smile To be able to one day hear both say  "We /I have Epilepsy... Epilepsy doesn't have me/us!




The future may not always be clear or look bright. Sometimes it's like you are given a timer as to how long you can look in life, But no matter how the future looks, we have to look up to the sky, keep our heads held high and pray. Hold on to hope, because sometimes, that's all you've got.

Mom does her best to cope and manage having epilepsy and having a child with epilepsy

Hope , faith, and love... It's what get's us through



TAYLOR PRESENT DAY


HE LOVES GAMING, ESPECIALLY ONLINE WITH HIS OLDEST BROTHER WHO LIVES OVER AN HOUR AWAY

GO PURPLE FOR NOVEMBER SUPPORT EPILEPSY AWARENESS


Final note: Let's not forget who we are fighting for, who we are giving hope and love to, by funding this campaign.

We are tired of being sick and tired of struggling while being sick, this is everyday life for us. (photo from most recent seizure)



another day, more seizures
THESE PHOTOS ARE ALL PHOTOS OF TAYLOR AFTER A SEIZURE 

Taylor has the best little service dog ever. He always there for love and cuddles when Taylor is feeling bad, sick or even like this photo (after surgery when Taylor was in pain and so tired). All he wanted was his dog. The little furry friend is always quick to warn when Taylor or momma is about to or is having a seizure. And afterwards they get lots of love and furry cuddles. (photo hours after a seizure at school)


Back in the day when he enjoyed life

The first day mom started CBD oil

His daddy is his best friend 

A CHILD AND A MOTHER:
REAL PEOPLE, WITH REAL STRUGGLES. WHO DESERVE A CHANCE AT NORMAL LIVES! 




 UPDATES GIVEN ON EACH OF THEM MEDICALLY AS THEY COME IN.


NOTE:
WE'VE HAD MANY QUESTIONS ON DONATING. ALL OF WHICH WERE WITH THE METHOD OF DONATING THE PAGE TAKES. IF YOU WOULD LIKE TO STILL DONATE BUT ARE UNABLE TO THROUGH THE MEANS OF THIS PAGE. PLEASE CONTACT THE HEAD OF THE CAMPAIGN THROUGH THE "COMMENTS LINK".

THE FAMILY HAS AN AMZON WISH LIST WHICH INCLUDES TAYLOR'S CHRISTMAS WISH LIST AND FAMILY "NEEDS" WISH LIST SEE BELOW:

https://www.amazon.com/gp/registry/wishlist/3AW30IR7DU4CO/ref=nav_wishlist_lists_1


Family Wish list includes some of the following:
 
-Gas cards- to help with travel expenses to/from medical appointments, tests, hospital stays et.

-Funds /donations for the purchase of their very expenseive  CBD oils (so they can continue with this only option and hope)

CBD oil donations

-Taylor wishes for - playstation cards and anything Destiny game related, such as figures, bedding, posters etc. 

He always says "I just don't want to have these seizures anymore. I get so sick of being sick, hurting , having a headache and stomach problems from them. I hate taking meds every day. I want friends. I want my parents to not have to worry anymore.

-Mom wishes for her child foremost more than anything in the world to be healthy, happy and seizure free, or at least off all these meds and seizures controlled by the CBD oils.  And to have her child have a more normal life and smile!
Other than that she just says: 
"A good nights sleep".

"Not to have to worry about all the expenses and what we are going to do about it every moment of every day".

"Materialistic things don't matter, my son does"!

"I wish to be seizure free or controlled enough by CBD to come off all these meds myself, so that I can be the mother and wife my family deserves and needs. I take pride in being a mother and a wife".

"To be able to go back to doing what I enjoy...Photography"!
And maybe... (call me crazy) just maybe, be able to ride some rollar coasters one last time before I get too old. Like I used to do when I was a child and ever knew I had epilepsy. (Which I did at the time, but medical technology wasn't what it is today and my parents had no clue). Honestly, they did not.

The entire family thanks each and every one of you!

Hope , Love , & Cure!

Feel free to drop them a note or email.
If snail mail info is needed please contact us.
Thank you!

Find them on Facebook and Twitter

https://www.facebook.com/taylorsfight4anormallife/


https://www.facebook.com/HopeForTaylorAndStacey



https://www.twitter.com/Hope4TayNStay


From this (left)   to this...(right). Is a miracle alone, but there is more!!!!

Doesn't take rocket science to see that CBD oil works!
So please help this family continue this life saving regimine for not only seizure control, but elimination of eventually all prescription medications and psych medications.  There is living proof, and this family is just that. 



PLEASE HELP IF YOU CAN IN ANY WAY YOU CAN THIS FAMILY TRULY NEEDS IT!