Toby’s Journey

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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.

08/03/2025

Sleepy brothers from being up all night 🤪
But oh do you look so sweet. Wakey, wakey
Good Morning everyone ❤️

08/01/2025

Toby Toes is one happy little soul this morning & wanted to say hi to everyone, happy Friday 👣❤️

07/30/2025

Toby boy got to show off his Toe art 👣
to little brother Hunter for the first time yesterday,
And here’s what they came up with!

07/29/2025

Friends, Tobys being such an amazing Big Brother to new Baby Hunter ❤️ it’s so inspiring,
as most of you know already, it’s hard for Toby boy to control all his involuntary movements like this due to his CS, LGS & Neuro work up,
But here he is being AMAZING ⭐️
Lots of clinics and specialists between the two boys, busy week again for us, I will do a more detailed medical update once all the labs tests visits ect are all in.
We hope everyone has a great day today. Sending “ High Footsies “ 👣👣🦶🦶
Oh and Toby will be showing baby Hunter painting with his feet today, stay tuned.

07/27/2025

I can’t believe a month has gone by already
With our Toby Toes becoming a Big Brother 🥰
So far Toby gives baby Hunter little hugs ( with my assistance ) sometime s Toby gives a raised eyebrow with curiosity, gosh I wonder what Toby Toes is thinking, but I can’t wait to see what’s next.
Sending High Footsies 👣 to everyone.
( some have asked about Baby brother Hunter aswell, would you like a few updates on him aswell? )

07/25/2025

Toby Toes Update with GI ;
So everything that day went totally unexpected, it went well though, although I was beyond anxious & even to the point of feeling sick to my stomach, I feel we got more accomplished this time around & here’s why;
For Toby’s unique GI complications, there’s a lot of unknowns to why and how to treat him,
Toby’s been TPN, GJ dependant and connected to an external drain bag for so long, with irritable intestinal tract, having a very hard time absorbing calories, dumping, gerds, ect ect. His GI issues don’t have the text book answer s.
For any newer followers to this Journey-
this is the second hospital for GI to try & help Toby, the first hospital, kept Toby boy inpatient for months on end, ending with newer drs coming on board, not hearing our concerns nor working together, with not knowing Toby’s case well or understanding his complications to why,
So we ended having to seek for more help elsewhere.
There were a lot of difficulties getting to the second hospital even down to obtaining Toby’s own medical records, and with any complex medical kiddos, not having there records at a whole new place, let me tell you, it was a beyond hard & frustrating situation, but this is a whole other experience for another time.
Back to the other days meeting.
I actually had the strength to just tell the social worker everything, the frustrations & how we feel, we’re not all working together.
We have a big team meeting now coming up the 2 nd week in August & hopefully everyone involved should now know how we are all feeling about the current situation.
Thank you everyone for giving me the strength to just do this, to truly advocate for our Toby boy 🙏🏻 standing up for Toby again finally!!!!!!!!
I was so anxious, terrified really and I even feel a bit sick to my stomach now, but Toby deserves so much more, I didn’t want to except being stuck in limbo anymore,
he deserves a chance to a happy healthy life, like getting back to being able to be strong enough for PT equipment.
I love this boy too much to just watch these doctors do this anymore, I truly know him best & Tobys capabilities, everyone here your such a beyond blessing to help guide us there, Truly thank you.
I’m building myself up again, or trying anyways, advocating this area of Toby’s journey has knocked me down, for a while, but I’m ready again & thank you everyone here for loving , praying & just being here for us, Words can’t express how blessed Toby & I are for you all.
Toby Toes is happy today, swinging his Toes in the air lol.
Happy Friday everyone 👣

07/23/2025

Please send our Toby boy your powerful loving prayers this morning as we go into another very important meeting with his GI team. Pray that we are heard .
This is the one department & specialists we have been having so many frustrating discussions over the last year or so,
the kind leaving us feeling hopeless, frustrated, definitely NEVER HEARD anymore and with a kiddo like Toby with all the rare out of the box stuff he has going on here, is so extra important, to be heard and working together is so so important.
I so hate feeling like this, but I have faith we got this today.
And here we go, ❤️👣

07/22/2025

Bear with me as were Adjusting to our journey, with so many added doctors & our new little addition to the crew ect ect. New new
We miss you all terribly & lots to catch up on,
But let’s start off with some smiles this morning,
Gosh Toby boy, he’s jumpstarted my day again already, love these sweet teethie smiles 🥰
We’re back & here, miss you all, medical updates coming, but Toby boy wanted to start us off with his smiles ! Awe thanks Toby Toes
How is everyone this morning?

07/02/2025

So much to catch up on as im slowly trying to adjust to the new busy busy days, but with all that said,let’s start off with new baby Hunters coming home pictures, Gosh did I mention, how good big brother Toby Toes has been 🥰
Let’s try catching up, New baby has had his referral s for cardiology at children s hospital along with close follow-up’s with the peds team there aswell, for our Toby Toes we also have a lot to catch up on at children s hospital aswell, but I will update more on that in the next update. 👣
I quickly wanted to share these below

06/26/2025

It’s amazing how time flies right by, days are feeling like a few hours & hours are feeling like just a few minutes, have any of you had days like these? Well thats what it’s been like for us the last few days. 👣
As we’re slowly healing & adjusting, I wanted to quickly hop on here and share some more of our last few days.
Sweet Toby Toes!!!! what amazing big brother he is already 🥰
Please enjoy and check out the cuteness bellow, it’s so great to share happy photo too

06/22/2025

Who’s ready for a really big surprise update!!!!! 🫶🏼
As complex as our Toby boys journey already is, I myself have been going through some pretty heavy health complications ( most of you know ) as well as expecting ( yes you read that right ) we have been a bit quiet about this due to all the heavy uncertainties!
Both Myself & baby have been through a lot of health scares over the past few weeks, that are hard to share at the time due to all the uncertainties,
I have preeclampsia, stage 1, unable to move at some points & other things, while baby was having different stages of cardiac complications, which had to be followed so much closer, with contractions myself starting at me being only 21 weeks with baby. So there’s just been so many unknowns that we just had to pray for & get through.
Well we did it, I was admitted again and just held inpatient till midnight of me getting to 37 weeks, to induce me, but we made it finally and safely 🙌

please help us Welcome little “ Hunter “ to our family, making Toby Toes officially a “Big Brother “ 👣❤️🩷💜
We are all doing well today & baby brother Hunter, does have some stuff going on, but otherwise is doing well & has already had a echocardiogram at bedside, only hours old with being referred to big brothers hospital cardiologist.
I didn’t think we would have to add cardiac care to the list of things for me to learn about, but we got this & ready to learn all we need to 🙏🏻
We are so blessed and excited & big brother Toby Toes is so curious and loving already 🥰👣
A big weekend for us, please everyone help us and “ Big Brother “ Toby Toes , welcome Little Hunter to the journey 🙌

06/01/2025

Reunited again 👣 Sunday snuggles with little Toby Toes is just what the heart needed ❤️
I’m discharged 🙌🙏🏻 now Time to focus on healing our Toby Toes, love you all, your prayers & love are truly amazing, We couldn’t navigate all this without you, sending high footsies full of love to you all. I’ll update more once we settle in, so many things going on with the Toby boy.

Address

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

Website

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

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