Mission Statement

Our main goal is to establish a support group where all individuals and families whose lives have been touched by Hydrocephalus & Spina Bifida can come together and share their stories and experiences.

We also hope to create community awareness to help others gain a deeper understanding of those affected by these conditions.

TODAY  IS  WORLD  SPINA  BIFIDA  &  HYDROCEPHALUS  DAY !!!

OCTOBER 25th, 2023

WORLD HYDROCEPHALUS DAY

September 20th 2023

IDA Merrett's and Group Health Centre Pharmacies

June 1

  IDA Merrett's and IDA Group Health Centre Pharmacies encourage you to check out this healthy activity and worthy cause! Rain or Shine Support Hydrocephalus & Spina Bifida Awareness during Troy's Trail 11th Annual Walk beginning at 619 Bay Street at the Active Living Centre. Registration starts at 11:00 am and the walk to follow at 11:30 am.

If you wish to pre-register or drop off donations ahead of time, the drop off is located at 382 North Street. Call (705) 946-4532 or (705) 989-4349

#communitypharmacy #community #yourhealthandwellness #getactive #spring #troystrail #sault #saultstemarie

Troy's Walk for hydrocephalus and spina bifida returns in person

The event has been virtual for the last two years and a virtual option is still available

SooToday Staff

May 20, 2022 12:04 PM

The last in-person Troy's Trail Walk was in 2019.photo provided by Troy's Trail organizers

Listen to this article

00:01:07

Troy’s Trail Annual Walk in support of hydrocephalus and spina bifida is back for it's 11th year as an in-person and virtual event.

The event was started by Troy and Annette Chandler in 2010.

“Our main goal was to establish a support group where we can come together and share stories and experiences, but more importantly make a positive difference in the lives of all individuals and families who are living with the daily challenges brought on by these serious disabling and life-long neurological conditions.”

On June 11, during Hydrocephalus and Spina Bifida Awareness Month, participants will gather at the Active Living Centre on Bay Street.

Registration starts at 11 a.m. on site but pre-registration is available at any time up until then as well.

Those who would like to participate virtually are encouraged to share video of their walk on social media.

Donations can be dropped off at 382 North St. or made by e-transfer.

For more information, contact Troy & Annette Chandler 705-946-4532 or 705989-4349.

Hey folks, just letting every one know that TROY'S TRAIL , our 10th Walk is officially in the books!  It was another successful event!  The awareness got out there, and we were able to raise some well needed funds for HYDROCEPHALUS CANADA- formerly SB&H !

A HUGE THANK YOU TO EVERYONE WHO PARTICIPATED, AND DONATED! 

ALSO THANK YOU TO ALL THE MEDIA THAT HELPED SPREAD AWARENESS FOR HYDROCEPHALUS AND SPINA BIFIDA!

TO ALL THE BUSINESSES WHO DONATED GIFT CARDS, PRIZES, AND FOOD, WE APPRECIATE YOUR LOCAL SUPPORT!

AND A SPECIAL THANK YOU TO GEES TREE REMOVAL SERVICE, Fratelli's Kitchen, & Soo Mill, Lisa Jennings, Colleen Laforest, Tiffany and Marvelous Signs & Designs, FOR MAKING IT EXTRA SPECIAL THIS YEAR!!!

OUR 10 ANNUAL TROY’S TRAIL WALKS WOULDN'T BE SUCCESSFUL WITHOUT COMMUNITY SUPPORT!  NONE OF THIS COULD BE POSSIBLE WITHOUT YOU!!

TROY & I ARE SO TRULY BLESSED!

SO FROM THE BOTTOM OF OUR HEARTS THANK YOU FOR ALL YOUR LOVE, CONTINUED SUPPORT,

AND FOR....CELEBRATING "10" WITH US!!!!

SOO MILL....FRATELLI'S

Troy’s Trail 9th Annual FUN-raiser Gone Virtual

YOU GUYS ROCK!!!! THANKS SO MUCH YOUR GENEROUS DONATION TO Troy's Trail SSM -Hydrocephalus, FOR HYDROCEPHALUS CANADA!

My name is Kelcy Vaillancourt. I am from North Bay Ontario. I was diagnosed with hydrocephalus in 2018 at the age of 28. After months of struggling with some unexplainable symptoms finally i had some answers as to what was causing it all! Within days of my diagnosis i had a vp shunt surgery. Thankfully i was blessed that everything went well and the shunt has been helping a lot! With minor ups and down i am finding my new normal and enjoying life to the fullest! Throughout my journey i have learned that i am strong and that this disease will not bring me down!

VERNELLI, Anthony

Troy and I had the pleasure of meeting Anthony and his wife 5 years ago. Each year he and Marilyn came out and supported our walk. And we also had the opportunity to meet their daughter and family as well.

Anthony was such a good man! He was so easy and nice to talk to. Annette and I are blessed to have gotten to know Anthony and his family. He will be greatly missed.

7TH ANNUAL TROY'S TRAIL - JUNE 9th, 2018

HUGS FOR HYDROCEPHALUS & SPINA BIFIDA

Today's HUGS FOR HYDROCEPHALUS AND SPINA BIFIDA picture entry is a sweet Father/Son moment between Guy and his Dad Tyler, caught by Mary Bouliane.

"I’m hugging my son Guy who was born at 31 weeks old. He had a grade 4 IVH and because of that developed hydrocephalus. He had his shunt put in at 2 months of age and is now almost 2. He is always smiling despite anything he goes through, he is truly our hero!"

Featured Artist Profile: January 2018 - Annie Martin

From Hilton Beach on St. Joseph Island:

 Local business offers support to Troy's Trail

Tuesday, October 27, 2015   by: SooToday.com Staff

NEWS RELEASE

HEALTHGEAR MEDICAL MART

*************************

Healthgear Medical Mart and Safety Inc. is asking for your help in supporting Spina Bifida and Hydrocephalus awareness during the month of November.

In babies with Spina Bifida, a portion of the neural tube fails to develop of close properly which results in causing defects in the spinal cord and in the bones of the spine.

Hydrocephalus is the buildup of cerebrospinal fluid in the brain, which may be congenital or present at birth.

Both illnesses can cause a series of symptoms that affect mobility.

From November 3 to 17, Healthgear Medical Mart will donate ten percent of all sales made on mobility aids to a local non-for-profit organization in Sault Ste. Marie known as Troy’s Trail.

Last June, Troy Chandler hosted the fourth annual walk known as “Troy’s Trail” in an effort to connect with other families suffering from the medical conditions as well as to raise funds for the Spina Bifida and Hydrocephalus Organization of Ontario.

To support Troy in his endeavor to host the walk in 2016, Healthgear Medical Mart is going to provide the organization with this kick-start donation.

You can help raise awareness of Troy’s Trail by visiting Healthgear Medical Mart’s Facebook page.

Those who like and share the fundraiser awareness post on Healthgear Medical Mart’s Facebook Page will earn the chance to win two greyhound tickets, a $50 gift certificate to Solo Trattoria and a Healthgear Medical Mart Coupon to use off a future purchase.

People are encouraged to share the post daily to increase their chances of winning the prize pack!

Customers interesting in purchasing mobility aids are encouraged to visit Healthgear Medical Mart at 262 Queen Street East.

Together let’s support those in the community of Sault Ste. Marie overcome the barriers of Spina Bifida and Hydrocephalus.

Events

CHECK US OUT!!! WEBSITE sites.google.com/site/hydroceph… FACEBOOK https://www.facebook.com/chanclan FACEBOOK PAGE facebook.com/TroysTrailSSM/ FACEBOOK TROY'S TRAIL facebook.com/groups/3355079… DONATIONS/FUNDING paypal.me/pools/c/82oXZc… or paypal.me/TroysTrail

Walk for Troy's Trail

Goal is to create awareness in Sault Ste. Marie on behalf of all individuals and their families who are affected by Spina Bifida & Hydrocephalus

June is Spina Bifida & Hydrocephalus awareness month.

Our goal is to create awareness in Sault Ste. Marie on behalf of all individuals and their families who are affected by Spina Bifida & Hydrocephalus.

TROY'S TRAIL is an Annual Spirit Walk that we organized and in 2012. The walk is a community event held down at Clergue Park by the waterfront.

It is a place to come and meet with other people who share similar experiences, and bring them together for mutual support, encouragement, comfort, information and positive feedback.

We are committed to reaching out and making a positive difference in the lives of individuals and families who are living with the daily challenges brought on by this serious disabling condition.

Feeling a sense of community (physical and emotional well-being) is essential in providing personal growth, closer inter-personal relationships, and increased self-esteem.

Therefore one-on-one personal support is encouraged between individuals with similar experiences to share coping strategies.

  TROY’S TRAIL 5th Annual Walk

∼ Walking for individuals and families affected with Hydrocephalus & Spina Bifida ∼

Troy and his wife Annette are SSM contacts for Hydrocephalus Canada, a registered charitable organization proud of its 45 year history of delivering programs and services that improve the quality of life of children, youth and adults with Spina Bifida and/or Hydrocephalus through research, awareness, care and advocacy.

In June of 2012 Troy’s Trail was formed to help raise awareness and offer support for research, support programs, and essential services for individuals and their families living with and affected by these life-long neurological conditions.

ALL PROCEEDS go towards research, support programs, and essential services provided by Hydrocephalus Canada.

SAULT STE. MARIE - When, at 28, Troy Chandler was diagnosed with hydrocephalus, he had been married to his high-school sweetheart, Annette, for only a few years.

The couple had an infant daughter — a son would arrive that same year, 1994 —and with so much to look forward to, the Chandlers were now facing an uncertain future.

Certainly they had each other and family — both Troy and Annette are born and bred Saultites — but both felt tremendously alone. Neither knew much about the disorder, commonly referred to as water on the brain, and had no idea if many others in the area were also affected. No local medical specialists dealt with the disorder and any significant treatment was — and still is — done elsewhere.

“We didn’t have anybody,” Annette says. “This was new for us and we had nobody to turn to.”

Troy shared his wife’s frustration.

"I don't want to see people be alone, because we were so alone ... We didn't know anybody,” he said.

It turns out the Chandlers weren’t as isolated as initially thought. Since then, they’ve discovered about seven others here with the life-long condition, which occurs when there is too much fluid buildup in the brain and the ventricles become blocked and are unable to drain properly. 

Realization took time and organization.

Since Sault Ste. Marie does not have a hydrocephalus support group, the couple became members of the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) and have been putting the word out via traditional methods and, perhaps most effectively, through social media.

Last year, the Chandlers first partook in The Spirit Wheel Walk Run to create awareness and generate research dollars for hydrocephalus and/or spina bifida, and plan to be out at this year’s June 8 event, starting from Clergue Park on the boardwalk.

“Last year, we had a family come out with us and their little boy was born with it,” Annette said. “This year, we found out we have a lady who was diagnosed last year. She’s 60 and she is going to be coming out for the walk this year. And we’re trying to get our other connections that we’ve made through the year and they are, hopefully, going to make the walk.” 

With hydrocephalus, fluid buildup causes pressure inside the head, which can injure the brain and cause it damage. About one in 1,000 will get hydrocephalus. Mostly children acquire the disorder or are born with it. One in 500 children will be diagnosed with hydrocephalus. If not treated, about half of those with it die. The rest will suffer intellectual and physical problems.

Symptoms include headaches, clumsiness, vision problems, tiredness, difficulty concentrating, vomiting, seizures, memory loss and confusion.

Troy was diagnosed after taking a seizure in the middle of the night. A ventriculoperitoneal shunt was installed and, so far, he’s had a total of nine surgeries and five seizures, the most recent of which occurred in 2008.

"I mean, he might not have to go back for any more (surgeries), but it can happen tomorrow," Annette said. "It can happen that fast. He has really no warnings anymore when (seizures) come."

The shunt, which redirects fluid buildup in the ventricles to a different area in the body, has been a blessing. It’s under the skin and not easily detected, albeit it can present problems, such as becoming blocked and sometimes draining too much fluid or not enough and may cause infections and bleeding inside the brain. A shunt may also have to be replaced from time to time.

"If I move my neck a certain way, you can follow it all the way down my neck,” Troy said.

“It starts playing tricks. Every once in a while I'll hear this noise, and I'll say to Annette, 'I think the shunt's draining.' It has to be just playing head games with me but that's what it does."

As for hydrocephalus’s other effects, Troy, 47, finds his short-term memory is suffering.

He still drives, which poses no major problems — sort of.

"The issue with me is remembering where I parked the car, as I've lost the car a couple of times."

Physical activity must be limited now, although some exercise is essential to battle osteoporosis, which Troy has also developed thanks to hydrocephalus treatment.

Although told he was likely born with the disorder, Troy wonders if playing hockey as a teen and racking up a couple of head injuries along the way weighed in.

"Did concussions play a role in it? I don't know."

Hydrocephalus is not considered hereditary, but both Chandler children have been tested.

Not everyone who has the disorder gets seizures, but because Troy does, he must take medication, which, in his case, brought on osteoporosis.

"And now I have to take stuff for osteoporosis and it just dominos,” he said.

“But it's nice talking to people (with hydrocephalus) and saying, 'Oh, I'm so glad you don't have the seizures.' I'm so happy about that."

It’s often thought those whose with hydrocephalus have enlarged heads. That’s not the case with Troy.

“He looks normal, regular to me,” Annette said. “I would have never have known it. He said he was always bugged when he was younger that he had a large head, but you see pictures and he looks to me to be totally normal." 

With some hydrocephalus sufferers, certain physical characteristics are “really distinct,” Annette said.

“Like when you see some of those pictures, there’s a visual problem, you can tell like, 'Oh my gosh there’s something wrong.' You can look at him and not think anything is the matter.”

The near-sighted Troy wonders whether his recent need for prescription glasses has anything to do with his medical situation.

"(Annette) says she wishes I didn't wear glasses because she says I have nice eyes,” he laughs.

But Troy said his character has shifted somewhat in recent years, as he’s become more reserved.

"Even doing this walk, I'm a nervous wreck,” he said.

“It's just so out of my wheelhouse to do something that brings attention to me. I don't like any spotlight. I don't think I was ever like that, but now I'm very nervous a lot."

Work has had to be scaled back to part-time for the Shoppers Drug Mart merchandiser, who holds a BSc in business administration, with a major in marketing, from Lake Superior State University.

"I should be somewhere in southern Ontario,” Troy said with a chuckle. “I wanted to stay in the Sault. We're very simple people.”

And happy.

Annette maintains her husband’s condition hasn’t tossed a wrench into their personal and family lives.

“We have learned to accept and live with what has happened and try to concentrate on the positive,” she said.

“We do the best we can when we can, and make the most out of life. The situation has made us better people. It has humbled us and made us stronger. The condition has put things in perspective in the sense that we realize what is important in life, where our priorities lie and not to take anything or anyone for granted. Things happen for a reason, and we can’t change what has happened, we just take it one day at a time.”

SB&H receives no government funding, and all donations go toward research, support programs and services to help those affected by the disorders.

The Chandlers hope to eventually drum up enough local support so that a Sault hydrocephalus support group can be launched.

“Now we are trying to help and support others,” Annette said. “For us, that is the reward.”

To make a donation to or participate in Troy’s Trail: Spirit Wheel Walk Run on June 8, please call 705-946-4532 or 1-800-387-1575, or e-mail chan_clan@shaw.ca.