We’ve “got your back” Jared!

$5,610 of $120,000 goal

Raised by 37 people in 6 months

Please help us make a huge difference in Jared’s life, by taking away just one of his many struggles with this life changing surgery, that will help him fix his scoliosis/spine while retaining the natural movement, function and growth it was meant to have!

I am a little late in sharing Jared’s story, due to all the juggling of our family needs lately....

Things have been such a whirlwind,  that I’ve only now had a chance to reach out and start this page.

Here is Jared’s story:
We are a family of 6 - my husband James and I have 4 kids. Three boys age 16, 14, and one whose 11th birthday is today, as well as a 6 year old daughter.
Our oldest son Jared was diagnosed with infantile idiopathic (no known cause) scoliosis at 14 months old.
His curve measured 14 degrees at that time and was considered mild, so the Doctor’s recommendation was to wait and watch it to see what it did.
We were told that sometimes these curves correct themselves on their own, and we were hopeful we would be so lucky. So we watched and waited and hoped for the best.

By this time we already knew Jared had some struggles as he had been a bit late in meeting his early childhood milestones such as rolling over, sitting up, talking and walking.
We were not excessively concerned however, as we were accepting and open to kids getting where they needed to be in their own time.
I (Allie) was a lifeskills support worker at the time for kids and adults with extra support needs, and was very understanding of individual timelines, learning speed and needs. We were sure Jared would catch up when he was ready. On his own time.
He couldn’t speak yet, as other babies were starting to do, but our sweet boy made his needs understood with baby sign language and picture symbols, thanks to support from the local Infant Development Program who was helping support us and Jared’s needs with assessments and therapies targeted to his needs.

Jared was a very happy, love filled little cherub that we were very tuned into. He was easy to love and care for and amused all who knew him with his ability to fall asleep anywhere he was tired, including a very festive Indian Wedding of a friend, and under the twinkling lights of a Christmas tree at a cheerful and loud Christmas celebration. He was just happy to be with those that loved him.

Fast forward a few years.... Jared’s scoliosis continued to grow through the years until at age 4 the curve had reached 31 degrees. He started wearing a Milwaukee TLSO body brace that we were hopeful would hold his curve from progressing so we could avoid major surgery on his little body.

At 5 years old Jared came home from preschool one day and had what we learned was a seizure. It was not your typical Tonic Clonic seizure that most people are familiar with (but did eventually turn into). It was scary as I had never witnessed any seizure before and was worried he’d had a stroke. He quickly received a diagnosis of epilepsy and started on medication that controlled the seizures very well. Other than a switch in medication required in December 2017, they thankfully continue to be well controlled by twice daily meds to this day.

Later on in his 5th year he received a diagnosis of Autism as well as the fine and gross motor delay (which we knew affected him from early on), oral and global dyspraxia (motor planning and coordination disorder-affecting walking and movement, speech and eating etc) and a couple other challenges as well.
Autism was yet another challenge he would live with the for rest of his life, but again with the right support we knew he could find his place and happiness in a world that is often not so accepting of differences.
Due to my profession as a support worker, I was confident we could advocate for his needs and support him to have a happy and fulfilling life.
Another challenge, but nothing we couldn’t help him with.
With love, understanding, and friend’s and family support we could do this!

Fast forward a few more years to now... at 16 Jared has worked very hard along the way to over come these numerous extra struggles.
He has done very well rising to the challenge of learning to speak, read, write and continues to work on understanding social cues and such that the rest of us take for granted. He is a typical teen in the way that he loves gaming and spending time with friends. 

He has diligently worn his rigid, uncomfortable and awkward body brace (that limits his movement and enjoyment of physical activity) for 22 hours a day for over 10 years now, (with exception of when it needed repair), in hopes it would help him avoid surgery.
Unfortunately with recent growth spurts his curve has become “a runaway train”as quoted by his Doctor.
Jared is now at the point of requiring surgery to stop his curve from progressing to the point of crushing his lungs and heart, and causing chronic debilitating pain.
It was considered severe at 40 degrees and he is now at 71 degrees (maybe even more by now).

The only option we have been offered in Canada where we live, is spinal fusion. This would involve cutting through the muscles of his back from his neck right down to lower back, having pieces of his spine removed, rigid metal rods installed on both sides of his spine, to be held in place with screws in his vertebra and then a bone graft packed down the centre of his spine that would eventually fuse to create a long solid and rigid block.

We have learned there IS another option available that has come to Canada within the last few years (but been performed for about ten years in the United States), called VBT-Vertebral Body Tethering.
Devastatingly to us Jared is not a candidate for VBT due to the narrow surgical parameters of this procedure. His curve has become too large and stiff for VBT to help him.
However..... in other parts of the world an advancement on VBT has evolved called ASC. Anterior Scoliosis Correction has been available and successfully performed for a few years now on both kids and adults, but it is not yet available in Canada.
Jared is eligible for ASC surgery and it will help him immensely, but he doesn’t have the time to wait for it to come to Canada!
He needs surgery now!

ASC involves a much less invasive approach than fusion, as a smaller incision is made under his arm, his lung will be deflated to gain access to his spine anteriorly (from the front), and although there are still titanium screws that need to be placed in his vertebra, the screws will be on one side only (the convex side of the curve), and they hold a flexible PET cord/tether to not only correct the curve on the operating table, but continue to correct using his future growth by holding the convex side as the other side continues to grow and pulls the spine out of the curvy shape to correct more with each bit of growth.
ASC maintains the natural movement, function and growth potential of his spine, unlike a rigid fusion.  
Keeping the natural function of his spine will give Jared better odds of not developing degenerative disc disease, arthritis, and chronic pain as he gets older, which is more of a risk with a rigid spinal fusion.

Fusion is irreversible, but ASC is a much less invasive first approach that if successful will allow him to avoid a fused spine forever.
We are confident ASC (with disc release to address his stiff curve) will be all Jared needs to once and for all correct his scoliosis and prevent a lifetime of additional spinal problems.

We have worked long and hard to find a capable and experienced surgeon and have made all the arrangements to make this a reality for our boy.
We finally did it!

We had to travel all the way to Barcelona Spain to do it, but we are now here on the eve of surgery, ready to go. 
We have met with the wonderful and kind Dr. Olaverri, and surgery is tomorrow, November 5, 2018!!

We are over the moon that we have been able to make this happen for Jared, but we now come up against the enormous medical bills that the medical system we have paid into in Canada, will not cover any of. 
Even though if he got a fusion in Canada they would cover the equally enormous costs, they will not help us with this surgery, but we feel ASC is his best option for his short and long term health and well-being, and it is worth whatever we need to do for him.

Without help, this medical debt will affect our family into the unforseeable future, which is why we are sharing his story and asking for your help! 
We realize the cost of this surgery is extreme, and don’t expect we will be able to raise enough to cover it all, but every single bit helps so much. 

If you could help with any donation in any amount at all to his cause, or if you are not in a position to donate, even just sharing his story so more people see it would help us immensely and we would all be eternally grateful.
Any and all funds raised will go directly towards paying off Jared’s medical expenses that include hospital stay costs, hardware costs, doctors fees and travel expenses. 
If you are not a fan of the Go Fund Me platform but wish to donate, please feel free to contact either my husband James or myself directly either on messenger/Facebook or privately another way.

Thank you you so much for taking the time to get to know a little about Jared and considering helping him. 

Let’s all show Jared “we’ve got his back”! ♥️
+ Read More
Day 12

Today is a LOT better day than yesterday AND the day before. Yesterday (Friday) Jared was very uncomfortable, dizzy and nauseated when he woke up. Vomitting within 5 mins of taking his morning seizure meds.
We gave him a second dose but then he still felt like he’d be sick again. I was so worried about if he threw up again. Would the meds have been absorbed by then? Did they even come up at all? Was he at risk of overdosing on them if they all did stay in his system?!?
TC seizures were not something I anticipated having to deal with at all while we were here. Simply because they are at this point so well controlled by his meds, but when I don’t know how much medication he’s actually getting, well that was a huge problem to me.

We anxiously awaited a return text from Dr. O about what to do, and if we could give him some Gravol anti nauseant, but didn’t hear back and so called his assistant who had him call us.
Long story short my phone wasn’t sending the text to the correct “long distance” number so he didn’t get the text at all.
He approved the Gravol- no contraindications with current pain and anti inflammatory meds. Jared needed two to take the nausea away, which they did. After he felt better and after eating for the first time in a while he had a nice long nap, and then woke again to eat a bit more! We’re so relieved!

His eating has been a huge challenge with all the “different” foods and brands available here and adding nausea and dizziness (from pain AND not eating well) on top of it was just awful.
It’s been a HUGE daily struggle.
Jared’s physical healing is making leaps and bounds, but his autism presents the biggest challenge at this point.
We continue to find ways to try and support him to do what he needs to do though. Incentives, etc. The usual.

So today he woke up at 5am and was heating up his own heating pad in the microwave, and getting a glass of milk.
I gave him an anti inflammatory at that point to set him up well for when he woke for the day, and around 9am he was up and moving again as “normal”. Like he hadn’t even just had major spine surgery 12 days ago!

The rest of the day has gone very well with Jared (only 1 morning Tramadol needed for pain and so far 3 anti inflammatories, and the one ranitidine to protect his stomach from the meds). So far no Gravol needed today.
He’s eaten on and off, walked around the apartment and rested watching Spanish TV while we have agonizingly and painfully TRIED to catch up on Curtis’ schoolwork....

I also had a bit of an overwhelmed moment amongst the huge and overwhelming schoolwork load (and glitchy My Blueprint online schoolwork submission program) after I heard a message left by BC Children’s hospital finally calling to book Holly’s pre-op appointment and surgery date for her second eye surgery. I admit, I cried a bit more from this too much focus on surgery for my babies, but we knew this was coming. It just feels so much on top I’ve everything with J and now the worry with Curtis’ super rare chest wall condition and worry about possible accompanying congenital heart condition and need for surgery himself if his echocardiogram shows a problem .... We had also expected Holls eye surgery to happen in the Summer (2018), and now we are looking at January 2019, the very week before we had planned for Jared to return to school after (fully?) recovering from his surgery.
I still have no idea at this point how he’ll cope with transitioning back into his school routine and his comfort level during so many hours at school, so I was anticipating needing to be available for whatever he needed.
Half days? Mornings only? Afternoons? No idea. In the life of someone with autism it helps to be prepared to offer whatever support they need, in order to make transitions as seamless as possible.
But I do know that my baby girl will be hurting LOTS and will need me as well!
If her last/first eye surgery at 2 years old is any indication of how this one will go.
Both my babies will need me.
Now to just figure out a way to split in two....
+ Read More
Not such a great day today. Started out ok, a good excuse to stay home as there was a major rain and thunderstorm on and off all day.

Had J’s check up with Dr. O and physio- J’s first day out of apartment since discharged from the hospital 4 days ago, and it was hard on him. Before he left he had a shower, which made him dizzy. He had three Tramadol (pain meds) today instead of the usual one, and ended up not feeling well when he got home, still not eating much at all and vomited. A blister he had develop on his foot in the hospital was a bit infected (different ideas about what caused it, from straps used to hold his feet during surgery, to a probe used to stick him to test his spinal cord during surgery). And J was not into cooperating with physio requests at all because he felt so uncomfortable and in pain by the time we got to the appointment, event though we used “cabify” to get there instead of walking the 15 mins. Physio said he was still doing better than most at this stage with his movement though.

Good news (after Dr. Bueno-thoracic surgeon that helped Dr. O on J’s case, and another Dr- can’t remember his name right now, generously offered to look at some pictures of Gav’s chest) is that Jared’s brother Gavin *only* has Pectus Carinatum, which likely doesn’t affect his organs, and that if he chooses it will likely be fixable by bracing while his cartilage is still flexible enough for that to work. But we’ll be getting Gav to send in more pics for the Dr to peruse (he’s at home and not with us on this trip).

The toughest part of the appointment and whole day frankly, was hearing that his other brother Curtis (who is here with us) has a super rare form of chest wall abnormality (the rarest one that exists) that only 1% of the population has. Dr. Bueno says Curtis has a mixed Pectus Excavatum combined with chondomanubrial Carinatum called Curriano Silverman Syndrome.
We are now going to arrange an echocardiogram to test his heart, while we’re still here to consult with these doctors after the test, to rule out congenital heart disease which is unfortunately common with this disorder (and therefore an indication for surgery). Unfortunately, if surgery is needed a Nuss bar (less invasive surgery) will not help his condition but rather he’d have to have “open” surgery that would cut part of his chest and lift it, to stop it from pressing on his heart.... I know I shouldn’t worry till we hear results, but I’m just so beat and tired from it all, and my mind goes there right away. So very tired and worn out today.
Perhaps tomorrow will look brighter, but today the pouring rain and thunderstorms in Barcelona perfectly reflect my mood and coping ability.

Tomorrow is another day of trying to find anything and everything to read up on Curriano Silverman syndrome.
Here’s a little of what I found today:

Good night all.
+ Read More
Hey friends and supporters of Jared’s journey!
I just found out today that Jared’s story was posted Saturday in the Langley Advance newspaper online

and Langley Times newspaper online:

AND AS WELL, the story came out in the print version in the Langley Advance newspaper on page three!
James says page three is a big deal and one of the best pages to have a story on!
Follow the link here-link goes to the whole paper and you have to flip to page three to see the story (same story as above links):

Thanks so very much Lisa for contacting the paper to help make this happen!!

I’m sharing this not only for Jared’s benefit but to also spread the word to those that may not have heard of ASC as it is a much less invasive and painful surgical option for those with severe scoliosis that are at the point of requiring surgery.

The precursor to ASC is VBT (vertebral body tethering) has been available at BC Children’s hospital since 2016:
But unfortunately wasn’t available to Jared any longer as he had grown out of its narrow surgical parameters.

ASC (an advancement on VBT) was available and a great option for him, but unfortunately not available in Canada yet, so we had to go overseas and were forced to pay 100% out of pocket with a major loan in order to access it for him.

Hopefully as it becomes more well known and advances further it will be available to those kids and adults who would rather have a less invasive surgery and avoid a rigid fusion, right here in Canada and covered by the system we pay into, as fusion and VBT are.

So for now I am sharing Jared’s story and spreading the word so people may have another option to consider, as most doctors have never even heard of it or are against it because they don’t know enough about it. I am hoping that Jared’s success with the surgery will help the process along and give people hope♥️
+ Read More
Day 7 and 8.
Well I guess I should have expected that updates would slow down eventually. We went full speed ahead for so long, and now.... the crash!

There isn’t much to update the last couple days about J’s progress because since he’s been discharged from the hospital, we’ve crashed a bit and been resting at our Barcelona “home” most of the day.
That was a lot of adrenaline flowing and supreme lack of sleep (and of course the major jet lag) happening for the past..... oh about 14 days. Since the day before we left home to fly here!

Also at this point I think J’s autism, inflexibility and struggle with the change in his routine, being away from home and different food availability (yes the reliable taste of familiar brands makes a HUGE difference for him accepting it) is way more of a challenge at this point than the actual physical recovery from the surgery.

Spirometer use is not happening as much as he should be doing it either. I’m going to have to find more of an incentive as this is something that’s important he be doing to help his lung return to normal from being deflated for the surgery.

Jared still has discomfort and morning pain until he has his 1 daily dose of Tramadol. We have increased his anti inflammatory by one, so he now has 3 of those per day- as it seems to help keep on top of his pain better. He’s having a bit more regular discomfort and pain the last couple days since he’s now moving around more, and therefore more pain from inflammation. He’s also continuing with the omeprazole to help keep his stomach from being bothered by the other meds.

Jared’s been using the gel heating pad a number of times each day and night as well, over his right upper hip and lower rib area, and this seems to help keep him more comfortable as well.

I haven’t minded the extra time inside at the apartment though, first because of the extra opportunity to rest and as well as I am now feeling quite homesick.
The language barrier has been a HUGE problem at times. Especially today. I am so very glad James is here to support me/us. I really wouldn’t be doing as well without him.
I’m here because Jared needs my specific support and James is here because I absolutely need him!
We’ve been enjoying stepping out together for alone time at the grocery store (woo hoo! Date time! Lol), but today it went terribly wrong as we didn’t get a sticker with the weight and price needed on some produce, and didn’t know we needed this until we were being rung through the checkout, so he runs back to do that while I wait, and as the minutes ticked by (I have no idea how long but it felt like forever) the people in line started glaring harder, I apologized as best I could and used my translation app to tell to the cashier, apologize etc and she asked me something (I used the translation app voice recorder to help me) but it got lost in translation..... and then people in line were talking angrily and glaring harder...... I just wanted to disappear.
James FINALLY got back, with the price stickers for the produce, paid, and I basically ran out of there as the tears started pouring down....I couldn’t get out of there quick enough!
Some people have been so very kind and patient with us foreigners, but others.... not so much.
THIS is one reason I would never enjoy travelling more. Homebody for the win!
Totally happy with being at home! Truly!

Another great thing about being “stuck”’inside at the apartment is it has allowed me to take the time for some new very important research and learning about Pectus Excavatum, as well as Pectus Carinatum. These are chest wall deformities that were confirmed for our two boys Curtis and Gavin just the week before we left for Spain. I wanted the diagnoses confirmed before we left on our trip so we’d be that much closer to seeing a specialist and getting the necessary tests to measure severity as well as growth expected/remaining for each boy (growth remaining is important info to know to gage treatment needed.
If there’s a lot of growth remaining, things could get worse very quickly with a growth spurt). I’m not sure who we will be referred to see or when, but the sooner the request goes in the better.
I don’t want to “miss the boat” on any less invasive treatments that will help them avoid surgery (if it’s indicated) in our own country (and therefore costs covered) like we did for Jared and his spine surgery.
I am scouring the world for the top experts for both these conditions so that we may send their test results (once we get them) and consult from afar to get their advice as to the best up to date and least invasive treatments, and also recommendations on who the best local Doctor in Canada would be for us to see. I am NOT going to waste potentially precious time again as things get worse, as we unfortunately did with Jared’s spine after being given incorrect advice.

We have very generously been offered a consult with a local thoracic surgeon (that was part of Dr. Olaverri’s team for Jared’s surgery) that will see us/Curtis at Jared’s check up with Dr. O this week. I’ve sent him pictures of both the boy’s chests, and he will look at Curtis in person, and then I imagine give his opinion as best he can for him as well as Gavin who is back at home.
From the pictures he’s seen he believes one of the boys may even have BOTH conditions (I believe he meant Gavin, but will need to confirm), which is super rare, and only 1% of the population. Also from what I understand, much harder to treat .

And so... basically, here we go again.
I need to educate myself, and quickly!
To a level that most doctors don’t even know, because although these are two of the most common chest wall deformities, chest wall deformities themselves actually aren’t that common, so nothing most doctors need to learn much about at all.
I had actually asked at least two doctors about Curtis’ chest when he was younger (he was a baby when I first suspected he had Pectus excavatum), and was told “it was nothing”. But obviously they were wrong, cause here we are, and it IS something.
I’m not mad, they just literally didn’t know enough about it to even know it when they saw it.
That’s how much they don’t know.

I leave you now with another “thumbs up” picture from Jared below.
Good night all! Or.... good afternoon perhaps if you’re in the Vancouver, Canada time zone.
I’ll update more as anything is worth updating about.
Likely Thursday after J’s check up with Dr. O.
+ Read More
Read a Previous Update

$5,610 of $120,000 goal

Raised by 37 people in 6 months
Your share could be bringing in donations. Sign in to track your impact.
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
ken dixon
3 months ago
Dagmar Paar
5 months ago
Roger Paar
5 months ago
Hermine Scrubb
5 months ago
Sarah Cranfield
5 months ago
6 months ago
Gail Burke
6 months ago
6 months ago
Pamela Dangelmaier
6 months ago
Elke Wehinger
6 months ago
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.