Toby’s Journey

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.

Dear Sweet Toby 👣Today is your Birthday 💜HAPPIEST of BIRTHDAYS To you !!!!!!!! Thank you for being you, From Your smar...
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.

Can this be! ❤️ be still my heart, ready for this!!!!! little Hunter has now been with our family for 6 whole Months! ...
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 peek 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.

Toby sure makes all his serious medical conditions here, feel like we can do anything!What a Miracle boy we have here, E...
12/19/2025

Toby sure makes all his serious medical conditions here, feel like we can do anything!
What a Miracle boy we have here,
Even through all the seizures recorded during this stay so far, he some how teaches us to smile ❤️
I love you so much Toby boy,
Sweet baby brother Hunter loves you so much too , you got this ,
We had a chaplain come pray with us at bedside last night, he prayed over Toby & gave him foot fives lol
Look at these precious photos of these two today 🤗
I’ll update more from rounds from today in a bit. We treasure you all so dearly & your prayers are doing wonders.

It’s really crazy how each admission to the hospital can be so different, Each one definitely has its challenges, for su...
12/18/2025

It’s really crazy how each admission to the hospital can be so different,
Each one definitely has its challenges, for sure,
With stress levels running on very high alert, with devastating blows left & right, then theres other Admissions that can be a scheduled procedure Toby has to have throughout his journey, although each one not easy, at least we more or less know whats coming.
An example I mean, there was this one long impatient stay, actually It was primarily for his seizures aswell coincidentally !
Anyways he was given so much of a medication to rescue & control his epilepsy , that he became unresponsive, having to have a RRT ( Rapid Response Team) code from ICU called,
having them all rushing to Tobys bedside at 4 am in the morning .
I remember at that point in time,
Just essentially, melting to those walls, as the room filled up with everyone from everywhere, I heard the different conversations from doctors spread out throughout Tobys room, yeah sure I hear the words and conversations said,
but honestly, everything was a blur at that point and I just remember mentioning over & over
“ just help him, & flush it all out of him”
We found out His Ammonia levels were sky high, he was shutting down & completely unresponsive .
He needs Dialysis, Toby had that code a few more times during that stay and
For friends & followers here from early on can remember this time im pretty sure.
So many uncertainties, so many scary times.
But Now, when it comes to placing a new central line or J tube or something like that, thats not as scary even though it’s another, saying our goodbyes ect.
And going under anesthesia again.
This admission for Toby is pretty intense, the teams are doing something new this time around, “ they lowered one of his seizure meds ( only so slightly) to learn more.
Thankfully , in Tobys case, rescue for him will & has been immediately,
most protocols they wait a few minutes for one to go through there seizure before rescue.
For Toby, the teams all know Toby has Epilepsy, theres no question, so why put him through a longer episode,
So anyways I am so thankful for this plan, also the Doctors this week, have really been studying Tobys epilepsy,
Truly taking time on his case,
we really are getting alot of new details,
They are supposed to round in the next hour, so I’ll update shortly after.
Toby is being such a brave boy,
he had another bit of a rough night
with IVs, You know they dont last with Toby & having no access is always the struggle, but thankfully iv team came in and was able to find somewhere new.
It really helps how they know our Toby boy so well.
He needs a couple access points for rescue, anyways, keep those amazing prayers coming, we truly treasue you all so very much,
High footsies from Tobys room 👣



Look who’s sitting up today 🥰Toby’s back asleep, but it has been another really busy day here in Toby’s room so hes just...
12/17/2025

Look who’s sitting up today 🥰
Toby’s back asleep, but it has been another really busy day here in Toby’s room so hes just very wiped out.
Gods work is shining really bright today 🙏🏻 I had food poisoning from one of the meal trays brought up to the room last night, so I myself am recovering from that today, but I promise to give a much better update with details once things slow down up here.
Most of you know I get excited, when our Toby Toes is showing off, so here below is one of those moments.
Please continue keeping Us in your amazing prayers, Toby boy has got this.

Good Night here from Toby’s room, Stress levels are extremely high And I’m really struggling tonight to hold it all toge...
12/17/2025

Good Night here from Toby’s room,
Stress levels are extremely high
And I’m really struggling tonight to hold it all together, it’s been ALOT!!!!!!
And I’m so beyond exhausted, but please know, Toby boy is resting 🙏🏻
Updates tomorrow, as my hands are still juggling all the busy here through the night. Goodnight Friends.

A long Rough night for our Toby Toes unfortunately & he ended up needing more support too 🙏🏻please continue praying for ...
12/16/2025

A long Rough night for our Toby Toes unfortunately & he ended up needing more support too 🙏🏻
please continue praying for treatment & comfort over sweet Toby & for some more seizure control as he goes through them 🙏🏻
After Rounds I’ll give some more details after some more clarity.

Hello everyone, so sorry we have been a little quite here, Toby’s inpatient again, Hes really being a resilient, brave b...
12/15/2025

Hello everyone, so sorry we have been a little quite here, Toby’s inpatient again,
Hes really being a resilient, brave boy,
Please continue adding sweet Toby Toes in your prayers as we navigate being in the hospital 🙏🏻
Specifically pray for Tobys epilepsy & more treatment options 🙏🏻
Its scary stuff, but I’ll update more on this in the next post.
The nurses & I have been busy decorating Toby’s room up here today,
We even have a tree up 💕
Sending hugs from us all here!



Good Morning Everybody ❤️🫶🏼🙏🏻👣No words needed really from me to describe this photo! I mean, When Toby gives me smiles l...
12/06/2025

Good Morning Everybody ❤️🫶🏼🙏🏻👣
No words needed really from me to describe this photo!
I mean, When Toby gives me smiles like these, my morning instantly becomes amazing, I was like awe “ I really took great care of you last night “ huh buddy, thank you so much for your love and all these beautiful smiles this morning, “ gosh” you would never know there were some ups & downs last night with his care, Toby & I just took it all with strides & smiles.
May these smiles this morning help jumpstart your day, like it has mine,
god is so good !
Miracles really are shining through today
Good Morning Friend s,

So far our busy week is going sloothly, We really have a good team work system going between myself & Tobys nurse, & i g...
12/04/2025

So far our busy week is going sloothly,
We really have a good team work system going between myself & Tobys nurse, & i gotta share, having this makes everything work out so much better with a whole lot less stress & emergencies,
Even though a lots going on. You’ve heard the saying “ in the storm of things “ well we definitely are rocking it this week and I truly am so grateful 🙏🏻
Toby had his “ home hospital” school photos done, and can you believe it,
Tobys nurse usually has to hold Toby in a chair and will hide behind a sheet for photos,
For new friends ; Toby boy is unable to, stand, walk, has alot of involuntary movements due to his intractable LGS type epilepsy & a severe form of a very rare syndrome called Christianson Syndrome, non verbal, all the types of feeding tubes as he cannot eat by mouth, ect. Ect.
So wait for it; Toby, sat in the little chair for his photo, “ All by himself “
Just writing this is giving me goose bumps, his movements alone doesn’t ever allow Toby to do this type of thing safely or successfully, but here we are & I was just so proud.
We even got a photo with eye contact,
I really felt all the hard work Toby was doing in those moments, god really has so much Miracles shining through our Toby boy, it was incredible .
Now Baby Hunter, he was a little hesitant at first for having all his scans done, ( at the Cranial center )
the specialist started off with some of there toys to help Hunter be a little distracted, but he wasnt having it, but as soon as the doctor took up my offer of bringing in “ Zibbie “
( Hunters favorite little “ jingle “ Toy )
Everything ran a bit smoother & the teams were able to complete the scans needed.
Baby Hunter snuggled up and was happy when it was all done. ❤️
I still haven’t heard back from the inpatient coordinator yet, in order to finalize some details for Toby, but hopefully today we will, another busy day ahead, but so glad we are able to have these days to get things in order.
Oh quickly, so we got our first hateful commenter, ( I didnt delete her yet)
Nor going to put her name out there or give too much time to this, but please , this is our only real page, our safe place , and everyones safe place to share, pray, love , keep updated on life and dont want to worry about any hate, im glad we haven’t had to worry about awful people like this till now,
It stings but moving forward, enough attention to that.
Hope everyone has a nice day today, you got this, we got this,
Off we go;

Address

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

Website

https://gofund.me/2ca084bf

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