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.

It’s been another busy day, Especially, for a Saturday,During rounds, everyone seems to think We are back on track, Not ...
06/13/2026

It’s been another busy day,
Especially, for a Saturday,
During rounds, everyone seems to think
We are back on track,
Not much throwing up anymore
Which we are all so, so glad.
Baby boys plans are to continue current treatments, genetics are supposed to pop by at some point,
OT & PT just love working with Baby Hunter, his little muscles are getting stronger.
Can’t wait for our Toby boy FaceTime,
His face, he gives such great eye contact.
Truly thank you everyone,
For being here,
For loving us through all this,
We still have a long way to go,
But I know we couldn’t do this without you all
And the safe space we have all created here.
In-between treatments
( not connected to anything )
( Our favorite time, )
I picked baby Hunter up and brought him across the room to sit with me
“ just looking out the window “
Into the hospital courtyard.
His little hand held mine
And he I could tell enjoyed this moment too.
Just sitting there looking, so peaceful out that window.
Let’s see how the rest of today goes.





https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

Here’s that address for birthday cards ect;
Gonna be so fun
Send to:
Hunter c/o Walsh
4560 Fountain Ave. rm 21
Los Angeles, CA 90029

Gosh has today been exhausting and busy,But this can lead to good thingsLike discharge soon maybe.Please continue prayin...
06/13/2026

Gosh has today been exhausting
and busy,
But this can lead to good things
Like discharge soon maybe.
Please continue praying for us and for these sweethearts to have a quiet
Night 🙏🏻
You’re the best everyone.
Check out Baby Hunter during bedside
OT today,
He isn’t able to get much in his mouth at all,
But “ oh “did he get to have fun trying.
I love seeing him getting to just be a kid/baby like this .

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

Here’s that address for birthday cards ect;
Gonna be so fun
Send to:
Hunter c/o Walsh
4560 Fountain Ave. rm 21
Los Angeles, CA 90029

Yay so far ……..Only one Throw up last night, followed by a very busy day so far, Rounds, followed by PT ( at bedside ) T...
06/12/2026

Yay so far ……..
Only one Throw up last night,
followed by
a very busy day so far,
Rounds, followed by PT ( at bedside ) Then right into OT ( at bedside.) dysphasia specialist & then currently back on treatments.
But in between I did sneak Baby Hunter out on the unit for a quick wagon ride.
( yes the nurse gave us permission 🫶🏼)
Awe…..
how Everyone loves saying hi to him.
Things are just so busy day in & out here, but soon there should be a moment to update better ( promise ).
We’re gonna FaceTime brother in a little bit.
Anyways…… Let’s see how today continues,
I’m really hoping & praying Baby Hunter stays on course like this.
We continue to feel all the love & prayers, your words are so felt on our end and treasure you all so dearly.
You’re the best, the community we have here is truly amazing, love you all.
Let’s see how today goes.
Please continue your amazing prayers & love for us today & help us share
Here’s those links on other ways to help

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

Here’s that address for birthday cards ect;
Gonna be so fun
Send to:
Hunter c/o Walsh
4560 Fountain Ave. rm 21
Los Angeles, CA 90029

So far we have gone all afternoon With no throwing up 🙌Goodnight everyone, Update in the morning, Hopefully 🙏🏻 all goes ...
06/12/2026

So far we have gone all afternoon
With no throwing up 🙌
Goodnight everyone,
Update in the morning,
Hopefully 🙏🏻 all goes smoothly tonight.
Sweetheart is resting,
So I’m gonna try to rest some too.
Please pray all goes smoothly tonight,
( especially for No more Throwing up )

For all that want to join in the fun in sending baby Hunter
happy 1 st birthday cards ;
Here’s that address ;
Send to:
Hunter c/o Walsh
4560 Fountain Ave. rm 21
Los Angeles, CA 90029

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

We have had a rough 24 hours……….Baby Hunter has been throwing up,Teams are really trying to find the right balance for h...
06/11/2026

We have had a rough 24 hours……….
Baby Hunter has been throwing up,
Teams are really trying to find the right balance for him.
And have I mentioned how aware he is,
He’s just so
“ Aware “ of Everything!!!!
As soon as the nurse starts taking out the blood pressure cuff
Or taking that stethoscope out ,
Hunter starts to freak out,
It’s awful,
Now throwing up,
So things have changed here a little bit
As doctors introduce different types of calories to baby Hunter.
We have hit a few walls, so to say,
And have had to make some changes,
His last throw was at 2 am.
At rounds today, after some discussions with the new changes,
We are ALL hoping for a better rest of the day today.
I know there’s a lot more to update,
Just know Toby boy is staying on course.
My heart has definitely been through the ringer with these sweethearts.
Today already it’s been non stop ;
-Throwing up
- shift change
-rounds
-treatment
-PT
-Social worker
-Treatment
And that’s just till now so far,
I will definitely do a better update soon.
Just know, please for today,
share this with others,
( for anyone that can support & pray with us )
Prayers are for Baby Hunter to be able to handle all these new changes for today 🙏🏻
( No more throwing up )
and for Toby’s seizures to stay stable till I can be with him again.
Love you all.

Here’s those links on other ways to help

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

Such a long day here at this hospital…….Goodnight Friends!I’ll share an address for baby Hunters Birthday cards along wi...
06/10/2026

Such a long day here at this hospital…….
Goodnight Friends!
I’ll share an address for baby Hunters Birthday cards along with medical updates tomorrow.
Please continue to add us to your amazing prayers, pray for a quiet night for healing and no changes to the current plans.
I just took this picture of baby Hunter,
He looks like he’s finally resting comfortably 🫶🏼🙏🏻

Good Morning here from baby Hunters room!Gosh do I miss Toby boy 💔“ Anyways “ Today so far has been a blur really,Can yo...
06/09/2026

Good Morning here from
baby Hunters room!
Gosh do I miss Toby boy 💔
“ Anyways “
Today so far has been a blur really,
Can you believe….
My wallet went missing for a while !
The charge nurse so kindly helped me look for it at 5 in the am.
But good news, thankfully about an hour ago it has been found.
I did also wander the hospital at 6 am for headache remedies again,
While sweetheart stayed with his nurse.

Good News, last night went better medically
Overall, no needed changes,
And we’re currently waiting anxiously
For the rounding Doctors.
After rounds & more information in,
I can finally hopefully share a more detailed update.
On a side note; I was thinking for baby Hunters 1 st. Birthday, besides the Amazon wish list, ( for those who have asked )
I was thinking how cool it would be for everyone here to send a birthday card to him.
It will be baby Hunters 1 st birthday 🎉

Any kind of card I think would be amazing, hand made, funny ones, cute ones…. What do you all think?
And share where your from,
And share this post
I’m still figuring out a good address to send to & I’ll hopefully have this by later today to share in the next post.
Truly thank you for keeping us all staying strong through all this,
you are all amazing.

I see the time, it’s just ticking away today already & So many different teams & plan changes throughout.Once orders fr...
06/08/2026

I see the time, it’s just ticking away today already & So many different teams & plan changes throughout.
Once orders from rounds this morning are in place
( meaning changes are put in the computer for the bedside nurses )
& I have a hand free,
I promise to update details more on the boys.
Baby Hunter was up again by 4 am again this morning & overnight doctor has been in & out of this room.
Baby Hunter is resting on me currently,
He’s Finally all snuggled up.
It’s a lot juggling everything
And OMG baby Hunters 1 st Birthday
Is just around the corner.
Thank you everyone, We continue feeling all your love & prayers,
I seriously wouldn’t be able to do this all without you 🫶🏼
Update in a little bit .
I’ve been asked about an address to send gifts,
I’m working on getting one,
As Toby’s P.O. Box isn’t available right now, I couldn’t afford to keep it open right now.

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share

It ended up being a pretty busy night Here at baby Hunters Hospital, by 4 am Baby Hunter was so uncomfortable & just “ U...
06/07/2026

It ended up being a pretty busy night
Here at baby Hunters Hospital,
by 4 am Baby Hunter was so uncomfortable & just “ UP “
the on call doctor of the night came to bedside and had Hunter disconnected from everything for a little bit.
By this point, I was feeling the
NO rest I guess ( weeks already )
& had that vertigo type headaches
Again.
I briefly found myself wandering the hallway’s of this Huge new hospital at 5am looking for there 24 hour pharmacy for Tylenol, while the nurse held baby Hunter.
After a lot of extra added things, to this crazy 5 am venture,
I found my way back up to the floor
With the resource nurse holding sweet crying baby Hunter.
Once back in my arms
He snuggled up happy 🫶🏼
Awwwww.
But can you believe he has stayed awake since zzzzzzzz
Plans for now are ;
To stay on course with
Checking labs for the re feeding syndrome and adding what’s needed
When baby Hunters blood tells us &
Carefully, Continuing to figure out what his body needs.
I’ll update some more on everyone
Once baby falls asleep 🤞
Your prayers, love, shares & support are so felt and truly thank you so very much, there are no words to how much we value you all.
Good Morning / Goodnight
Happy Sunday.
Update better in a little bit.

Here’s those links on other ways to help

https://gofund.me/9d5e241b0

https://www.amazon.com/hz/wishlist/ls/3L1ZPB2GJZ1VO?ref_=wl_share



Address

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

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