Toby’s Journey

Home
United States
Los Angeles, CA
Toby’s Journey

A special little boy named Toby, Living with so many Unique Complicated Medical Conditions Hello Mr.

Toby is a seven year old little boy diagnosed and living with a very rare syndrome called Christianson Syndrome along with some other unknown issues/ Syndrome that is not diagnosed, his syndrome primarily affects his nervous system making him unable to speak and problems with balance and coordination also making it nearly impossible to walk, but I still pray Toby will one day ( he’s always trying) Little Toby also lives with a multi Seizures disorder, Hypotonia throughout his body, severe GI complications and is unable to eat by mouth (NPO) I was told by the hospital early on that Toby wasn’t gonna have long, but he keeps proving otherwise and just continues being amazing and battling on. I decided to share & start a page for sweet Toby to keep family & friends updated and in hopes to build this special boys prayer army as he is going through all of what he does and help spread love and awareness for all, we keep learning every day. Please like & follow Tobys Journey and come join us as we defy odds & learn along this journey of life.

01/29/2026

And off we go,
Pray for some answers from the urology team this morning and his neuro genetic bladder 🙏🏻👣
Gosh I love these smiles Toby boy ❤️🩵💜🩷

01/28/2026

I’ve been so beyond exhausted these days,
And even having one hand free ( quite Literally ) never seems to be a thing for me at the moment.
With all the “Busy” Toby care &
Baby Hunters gums swollen and being the busy baby that he is,
he literally, wants to be in my arms like all the time or breastfeeding,
I am WORN out………….

These days though, I really am enjoying sharing these boys happy stories,
I truly hope they have been inspiring for everyone & enjoyed.
But there’s so many daily hard times I don’t share,
I really try my hardest to focus on the happy moments,
maybe because if I write it all here it is all that much more real,
( I know that sounds a little ridiculous )
most likely, its because it’s really so overwhelming and just “A lot,”………
So sharing happy moments just helps i suppose.

Anyways, Toby has so much going on from his head to his little Toes, it crushes me, during the quiet moments.
Here the latest,
Toby’s Neuro; since being discharged, we’re learning every day, how to manage “ Toby’s “ new Normal, handling his daily seizures, which I’m told is about 2 or so a day, but they are very brief, sub clonic type, his arms stiffens a bit & jerks but its all very brief & has his over all background running all abnormal, ( which it has done now for a while )
This is, believe it or not, a whole lot better, than when Toby was a baby,
He started with having such bad Huge grand mal type seizures, turning purple, being rushed to the ICU for help.
You can see why this is a much better “ Toby Stable “
But……… Hey, I gotta say,
Toby sure does navigate all this like the little rock star that he is.
We still are scheduled and waiting for the big Neuro meeting to go over everything from that inpatient stay.
We’ll have alot more information after this meeting.
We actually are kinda waiting on a lot of departments to meet up with them again, but I wanted to give a little update in the meantime while we wait.

Urology and ultrasounds;
Toby’s Neuro genetic bladder has been acting up a bit again lately,
He is retaining again,
Poor guy just doesn’t feel or have control during these times,
To feel to go to the bathroom when needed. He literally can not p*e for 24 hours.
Between having to help him with this,
And getting UTIs ,
Toby has been seeing the
Urology team more.
Toby just had more Ultrasound s done & we have a meeting with Urology again tomorrow, so we’ll hopefully have more answers soon.

GI and ongoing intestinal issues;
This is probably Toby’s toughest battle, ( at the moment)
His body is having such a tough time holding on to any calories,
We are currently trying out , really one of the last formulas in his J tube,
What I’m told by the dietitian,
Is that this formula, is so broken down, meaning, a machine breaks down the formula even more for Toby,
So Toby’s body doesn’t have to work as hard to break down calories.
The carton even feels lighter,
So we’re hoping his body can handle some of this.
But there’s a lot going on here too,
And I’ll update as we keep going.
There’s a lot of struggles in the background,
But you know what,
In the midst of all this,
Toby Toes, reminds me all the time to “ SMILE “
And gosh I hope you all love all the happy stories these two boys have been doing lately, little Miracles ❤️
You can see what sharing just one happy story can do,
With all of the daily, hourly, minute by minute, kinda things that go on here.

Be in the moment, and treasure it,
I got the biggest smile this morning,
Toby literally just woke up & turned to me with this most amazing smile,
I mean, how does he do that,
Awe thanks Toby for that jumpstart.
Hope everyone is well,
And as I navigate trying to literally …….
having a hand free,
Any hand lol
I’ll update after urology’s meeting tomorrow .
In this Photo ; If you look closely, Toby’s got both his arms around us 🥰
And I know I don’t need to remind everyone “ just “ how hard it is for Toby boy to do this, awe

01/25/2026

Good Morning from these amazing happy boys ❤️ I hope these smiles can help jumpstart your day, Happy Sunday!
Thank you boys 🥰 momma needed a jumpstart

01/23/2026

Well we’re definitely due for an update,
I know, but tonight,
I have to share with you all, another amazing Toby boy story first.
Ok, so Toby takes a lot of medications throughout his day, but a lot more for his mornings & nights.
Anyways, Nightly I syringe up his meds for the night and put them on this plate.
Tonight, as I started to get Toby’s medications ready,
Here comes Toby Toes,
while showing off his scooting skills again,
Crossing the living room so fast,
The next thing I knew
Toby was at my feet in the kitchen,
Well Actually sitting on my foot lol
“ can you guess what Toby did next”
…………. Well…………..
with a very well played wet toy in one hand & a huge smile on his sweet face,
Challenged his high kneeling skills again,
And “ literally “ I blinked, it was that fast
Toby had pulled himself up,
( while holding onto me of course )
And had his little arm on my shoulder.
At this point, Toby already made my night,
But no, Toby wasn’t done showing off yet,
He leaned over & tried picking up one of the syringes,
Ladies & Gentleman,
Toby literally was trying so hard, to help me. 🥹
Again, I didn’t get to video any of this,
But it will forever be stored in my happy memories,
But I did get this picture
He even smiled for the picture.
I’m not sure what’s happening with all these amazing things Toby’s trying so hard to “ Just do “
Maybe Toby loves the kitchen 🤪
Just kidding, but whatever it is
I’ll take it.
Most of you know how challenging all this “ REALLY “ is for him , i mean, Just trying to control &
Overcome all his involuntary movements alone, it blows me away.

But for all that’s new to Toby’s Journey,

Briefly ; Our Toby boy here,
has a severe form of Christianson Syndrome and also lives with intractable LGS (Lennox Gastro syndrome ) with these diagnosis, Toby has all the feeding Tubes unfortunately ( NPO, ) unable to stand, walk, non verbal, hypotonia throughout his whole body, neuro genetic bladder & gut, motility essentially doesn’t work, alot of intestinal issues, involuntary movements & for Toby’s case his epilepsy, most recently shows his whole background being abnormal, with seizures all over his brain, with stronger areas to the occipital & frontal lobes.
And this is while being on 4 maxed out seizure medications, ect.

Anyways, so, with all that Toby lives with
And hearing the story above, isn’t it just
“Amazing “
I mean I get these chills of joy,
Miracles is what he’s doing.
Its been another busy week for us,
Ill update on that tomorrow ,
Just wanted to share
Another cool in the moment story
With everyone .
You guys, we sure do have a miracle boy here, thats ready ( I feel ) to show us ALOT more.

01/20/2026

About to go into Baby Hunters scans to see how his head growth progress is presently.
For all that are new to our Journey,
Baby Hunters Doctors have been keeping a close eye on his head growth due to a few things they saw,
Baby Hunter is doing so well though.
Lets go kick some butt & conquer these scans 💪🙏🏻 but prayers would be amazing too

01/18/2026

It truly amazes me every single day,
How Toby Toes truly tries so very hard to do a new skill.
Get a box of tissues & be ready to shed a tear reading this next part of the story that happened this morning.
So, We actually had a little bit of normalcy so to say, as we spent a little time in the kitchen making waffle s, ( we hardly ever get to do this ) anyways…….
Baby Hunter was in his stroller with us
And here comes Toby boy, “ Scooting “
Into the kitchen to join in,
Now Remember , Toby cant walk, stand on his own, non verbal, severe intractable Epilepsy, all the feeding Tubes ect.
Picks up a baby toy,
“ Ok, Get ready for this ”
High kneels up, then grabs on to my hands to stand, holding onto me,
Leans over & tries to lean in to baby Hunter, “ To give him the Toy “
I was sp*echless!!!!!!!!
I mean, The medical world can say all they say about Tobys conditions,
( its very grim, but its “ Toby Stable “ )
I wish I caught this on video,
But there was so much purposeful stuff going on during this,
Holding this toy,
Thinking of giving this toy,
Thinking of how to give baby Hunter this toy, grabbing onto me for support so he could stand, i mean it really was amazing 🥰
Anyways, wanted to share our little Miracle boys amazing strengths of the day.
The little things we all just do, I know,
But our boy here is really just trying his hardest and you could see in his face and the way his eyes “ were telling me “
Yay, I got this momma.
Happy Sunday everyone
Skies the limit, got my inspiration for the day indeed

01/16/2026

Who needs a “Jumpstart “ to there morning ❤️
“ I do, I do, I always do lol 😋
How can you have a bad anything with these smiles,
Getting the day started over here, it’s been so busy ( surprise, surprise )
More to come later today.
And……… Let’s Go

01/14/2026

Good Morning & off we go!
our baby Hunter ( omg ) he continues to stay up all night & tag teams with his brother, so this momma is barely getting two hours in a row of rest these days, beyond tired is an understatement and im writing this with my eyes barely open, but you know what, you just have to sit back & smile sometimes,
& power through,
Amazing what a little smile from Toby or baby Hunter saying “ Mumma “ does
Anyways, back to the hospital for a busy day of, Ultrasounds, bloodwork, 6 Month shots, and Doctor visits,
we’re all tired, but blessed, and our Toby boy is happy.
I’ll try to get some better pictures of the boys as they “ be brave “ Today,
sending “ high footsies “ from all of us, Let’s go ! 🙏🏻

01/12/2026

A challenging weekend for us,
But I choose to start this week with smiles, ( one couldn’t tell the challengs with these smiles )
here’s our Jumpstart to the week 🥰 busy week & back to all the appointments & catching up, I’ll update a little later today! Hope these glorious smiles jumpstart your day too!
Good Morning everyone ❤️

01/09/2026

Happy New Years Friends, gosh we have missed you all,
is Everyone ready for a long overdue Toby boy update!!!!!
( sorry for the long update part, but there’s a lot to try catch us all up on )
Ok, well our boy here really has the teams working on overdrive,
his epilepsy really is that challenging to find a balance,
And I say “ balance “ because, it’s not something that will get better over time, yes there are people that have epilepsy and there epilepsy can get better, but in Toby’s case, because he has his other rare underlying condition, the reality is, Toby will have epilepsy for the rest of his life, it’s more about quality, and controlling his seizures the best we can, at this point.
During the last few weeks the Neuro team, only had to lower one of Toby’s seizure medication s by
2 mls,, while staying on all his other seizure control medications,
as they already saw it would not be safe to lower any further ,
due to all the seizure activity they we’re instantly seeing.
One of my fears going into the hospital this time, was that Toby would go through a big “ grand Mal “ seizure or really any seizure & the protocol for rescue would be the typical, which is to stand by & wait 5 “ WHOLE “ Minute s before rescue, can you even imagine! !!!the nurses even told me, they hate it, just waiting & watching without being able to administer rescue.
Anyways I asked & showed my concerns about what we should do regarding Toby‘s rescue protocol s & I found out at rounds, fToby’s rescue for his seizures, orders are to
“ Rescue him right away “ ❤️
Omg, just hearing this, I instantly felt a major sense of relief for him & for all of us & hugged Toby.
Doctor Yoshi told me, since we already know Toby Toes has intractable epilepsy, there’s no need to have him go through it all or get to a point where we cant stop it.
As Rounds continued on over the week s , I’m told his overall brain wave background is all abnormal
( the whole thing! ) ( same as before, not better, but not worse at least)
with high spikes all over, but more in the frontal & occipital lobe,
The frontal lobe there seeing more seizures though this time
( which is new )
Dr. yoshi further explained she also sees, about two smaller seizures a day, with abrupt sub clonic type seizures.
What do we do now, well at the moment, we have decided to ride this out, what the doctor s & I call, “ Toby Stable “ a bit longer,
He’s maxed out on all his meds, and I really don’t want to go to brain surgery yet.
I know it’s strange to say or “ really” accept on average Two seizures a day ect. Is “ Stable “ but reality is, !!!!!!
“ It is for Toby !” There short type seizures at the moment & his team wouldn’t agree unless safe to do so.
During all of this, Toby wasn’t aloud to leave that hospital room, he had to stay in bed 24/7, so I tried the best I could to bring the holidays & his birthday to him.
We did matching holiday PJs, a little foot art, had a few visitors, Warren also had some “ guy time” had the chapel visit a few times praying over our boy, even gave him a special prayer rock,
oh & some therapy pup visits and well after asking the charge nurse , she did let Toby Toes get disconnected from everything
( for a quick 20 minute s) so we could go see Santa downstairs, as Santa wasn’t able to come up to Toby this year,
So this was extra cool , Toby & Santa just looked straight into each other’s eyes. A very magical moment !
Wound care and a few other specialties joined in, Toby had a special bed ordered, due to concerns for further pressure sores, which we definitely don’t want to become a problem, and there were some challenging moments,
Baby Hunter was such a trooper to, he got to have a Christmas tree right next to his bassinet near big brothers bed, while I laid with Toby,
getting up, to feed baby Hunter through the night.
So many things to juggle & then throw in the holidays, Toby’s Birthday, Toby caught something too, so he’s been sick on top of everything, but everyone, we are home and healing, catching up with everything, ( or at least trying to 🤪 )
All your prayers are so felt, loved & tremendously appreciated here, you have all helped guide us everyday, words written really can’t express the gratitude we have for you all.
Sending lots of hugs from us and high footsies from our boy here. Please keep Toby in your prayers for the long road ahead of unknowns .
Gosh we have missed you all.

12/24/2025

Dear Sweet Toby 👣
Today is your Birthday 💜
HAPPIEST of BIRTHDAYS To you !!!!!!!!
Thank you for being you,
From Your smart infectious teethe smiles, your two armed hugs, with so much meaning in them, being non verbal is totally cool ( challenging to some )
but not to me & your so smart, you made a language between us instead 💜 from Your giggles, your fast fingers all the way to your talented Toes,
from when it’s time to go be brave again, to all the many adventures whatever we go on,
I am so truly honored to be the one you continue to teach, day in & day out.
The way you teach me everyday & seeing this big world in such a different perspective is truly so beautiful & its all you little one, just amazing
I am truly blessed, honored & so grateful for the smart little ( big ) boy that you are becoming,
Even the curveballs you throw, ends up teaching people in your life even more,
Toby “ Keep reaching for the stars
( with your Toes 🤪 )
skies not even a limit for you, you just keep reaching even further.
I anxiously look forward to what you have in store for us next, I’m sure you have a “ Toe “ Full of surprises for us all & can’t wait.
HAPPY BIRTHDAY 🎂🎈🎉🎁🎊 👣❤️🙌🍦🍭🧁🍰🍫🍡 👣🙌❤️
Big boy is now promoted to being a big brother now too, yay “ big brother Toby “

Side Note ; Its really crazy weather were having right now in Los Angeles,
Atmospheric weather the newscaster’s call it! Flooding everywhere, mudslides, really dangerous winds, fallen trees, tornado watch even, please stay safe out there.
HAPPY BIRTHDAY SWEET TOBY TOES !
Truly HAPPY BIRTHDAY to the bravest boy I know,
And happy Christmas EVE everyone.
Please enjoy below our sweet boys photos, no particular order, just loving life through all life’s hurdles.

12/22/2025

Can this be! ❤️ be still my heart,
ready for this!!!!! little Hunter has now been with our family for 6 whole Months! Say what!!!
Where has the time gone.
Sweet baby Hunter can now mimic back blowing raspberries like a professional 🤪 says momma, ( really clearly )
“ he knows how to call me “ 🥺
I get so excited & emotional really when he says this. ( I didnt get to experience this with Toby )
tummy time is getting so much better, rolling more, plays p*ek a boo with me, loves Hawaiian music, I mean “ Loves it”& his Zeebie, tries to grab for big brother Toby boy all the time, belly time with Dadda, sits with assistance & is the sweetest little blessing to our journey.
Gosh I Can’t wait to see what’s next.
Happy Monday Friends, and what a big week of festivities ahead this week & big Brother Toby’s birthday is coming up on Christmas Eve.
Sending hugs from us all and update in a little bit.

Address

P. O . Box 17311 Encino
Los Angeles, CA
91416

Website

https://www.gofundme.com/curing-little-toby, https://gofund.me/2ca084bf

Alerts

Be the first to know and let us send you an email when Toby’s Journey posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Toby’s Journey:

Shortcuts

Want your practice to be the top-listed Clinic in Los Angeles?