Tanglewood rallies around family affected by ALS

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Tanglewood Elementary accepted the challenge of third-grader Maddie Hadley and participated in the Amyotrophic Lateral Sclerosis (ALS) ice bucket challenge Friday.
Together Tanglewood students, teachers and even the principal joined in the fight against ALS by dumping buckets of ice water on themselves to raise awareness about ALS and by donating money to raise funds to find a cure.
This wasn’t a regular ice bucket challenge however. Maddie challenged her school because her dad, Collin Hadley, was diagnosed with ALS earlier this year.
“It was gut wrenching,” Collin’s wife Emily Hadley said. “The hardest part was that we were still being very quiet about it. We weren’t sharing it yet. So in a way, maybe it was a positive  because we were forced every day to wake up put a smile on our face, get up and continue our daily routines. There really wasn’t an opportunity to lay in bed and cry for a week, that wasn’t really an option.”
ALS, also known as Lou Gehrig’s Disease, is when a human’s motor neurons slowly degenerate and eventually die. The motor neurons are responsible for communication from the brain to the muscles. The motor neurons affected by ALS are the ones that provide voluntary movements and muscle control.
“You slowly lose all of your abilities and I think people don’t realise what a crippling devastating disease it is,” Emily said. “You can do experimental things but there’s been nothing shown or proven or anything that you can take that’s going to stop that process.”
Emily said that there are many misconceptions about ALS, one such being the impact it has on the brain.
“People don’t understand that the mind and the brain are never affected,” Emily said. “There are still the same person inside. Dad is the same inside, he always will be the same inside.”
Collin is still in the early stages of ALS, but the effects are starting to show. His wife Emily said that Collin will sometime struggle with buttons or other small things.
“The things that Collin really struggles with right now are fine motor activities so he needs help,” Emily said. “And the kids will help with that.  Madeline [Maddie] especially, she is very nurturing.”
Maddie, who said her favorite activity to do with her dad was to talk, also helps him with other things.
“Sometimes I help him up if he falls down,” Maddie said. “It was hard to get him back up.”
Collin said that his kids have handled everything that has happened phenomenally.
“They’ve really stepped up in a way I really wouldn’t have expected,” Collin said. “They’re helping out at the house, trying to see what else they can do. They’ve responded very maturely.”
A family with “hearts of gold”
The Hadley family was known in the community for their kind heartedness even before the diagnosis.
The Hadley family, Collin, Emily and Maddie at the Tanglewood Ice Bucket Challenge. Conner, a sixth grader and McLean is not pictured.
The Hadley family, Collin, Emily and Maddie at the Tanglewood Ice Bucket Challenge. Conner, a sixth grader and McLean is not pictured.

“They’re just an amazing family with hearts of gold,” Tanglewood parent Holly Wiley said. “All of them always have smiles on their faces all the time.”
They are also known for their continued generosity.
“They are the most loving, giving people,” Tanglewood parent Valerie Simanek said.
Over the summer the Hadley family performs mission outreach every week. They also work with the Gladney Center for Adoption, providing a temporary home for babies before they find their forever home.
“It’s a commitment that the whole family takes on,” Tanglewood Principal Connie Smith said. “They truly are givers as a family.”
As a third grader at Tanglewood elementary, Smith said that Maddie is a good student and had lots of friends.
“She’s precious,” Smith said. “If I had a little girl, I’d want a Maddie.”
Wiley said that the community response for the Hadley family has been great and that there has been an increase in awareness about ALS because of them.
“I think people that didn’t know what the disease was now do and want to help and support it,” Wiley said. “It’s nice to see the community reach out to them and to help them in this time.”
Bring a Buck and a Bucket

The ALS ice bucket challenge works by friends challenging other friends to either dump a bucket of ice water on themselves, or donate to ALS association. Over time it merged into doing both the bucket dump to raise awareness, and the donation to raise funds for ALS research. in 2014, $115 million was raised for ALS.
After her brother Connor challenged his school, McLean 6th, last month, Maddie invited Tanglewood to do the ice bucket challenge too.
I just really wanted to challenge a whole group so we could raise more money,” Maddie said.
Summer Jones (left) and MaryEmily Pardue
Summer Jones (left) and MaryEmily Pardue

The challenge was well received, and Tanglewood parents MaryEmily Pardue and Summer Jones put the plans in motion to make it happen.
Pardue said the event really exemplified Tanglewood’s motto this year of “Tanglewood Family Love.”
“A group of parents wanted to help make sure this happens,” Pardue said. “We meet with the principle and worked out the details.”
Those details included getting about 1,200 lbs. of ice and organizing Kona Ice trucks to come to the school to sell snow cones, with a portion of the money made from the snow cones going to ALS research.
They also came up with the slogan, “Bring a Buck and a Bucket,” which encouraged those who were taking part in the challenge to bring a donation of some sort in addition to their bucket. Those donations, as well as any more families wanted to give, were collected in buckets with signs saying “Put a buck in the bucket” or “Tanglewood Tigers for Team Hadley” taped on them.
The Simanek brothers from left to right, Max, Eli and Leo.
The Simanek brothers from left to right, Max, Eli and Leo.

Three of those students who accepted the challenge were the Simanek brothers, Max a fifth-grader, Leo a third-grader, and Eli a kindergartner. Max and Leo said they were taking part in the challenge to support ALS and Eli said he was doing it to raise money.
Tanglewood elementary participated in the ALS ice bucket challenge last year, but Smith said this year it was something more.
“It was a fun activity that we could do to support a good cause but this year it takes on a little different meaning,” Smith said. “It’s up front and personnel this year.”
Before the actual dumping of the ice water occurred, Maddie, dressed in her bright orange “Team Hadley” shirt, gave a speech to all those assembled, explaining what ALS is and how this challenge supports it. She also challenged the Paschal cheerleaders to participate in the challenge next.

Collin, who was also at the ice bucket challenge, said he was so grateful for the school’s and the community’s support.
“This event is awesome because it’s not just our family dealing with what we’re dealing with,” Collin said.  “It shows what Tanglewood and Fort Worth is all about. It’s a community that comes together for so many different causes. It means a lot to my family and I because of that.”
Emily is also grateful for everything the community has done for and her family.
“It’s incredible,” Emily said. “We’re just so grateful to our community, to our Fort Worth, to our neighborhood, to the schools for showing support, to the friends and family that have reached out to us, to all those praying for us and cheering us on.”
Looking Forward
In addition to both the kids schools doing the ice bucket challenge, the Hadley family is working to raise money for the ALS Therapy Development Institute (TDI). The TDI is a nonprofit biotech which focuses on developing treatments for ALS.
“It really is doing amazing things to better understand this disease and to hopefully someday find a cure for it,” Emily said. “They are so passionate about understanding this disease.”
Collin is going to be in a study at TDI in January where they will collect blood work and biopsies in an effort to learn more about ALS. The study was directly impacted by the ice bucket challenge.
“They thought they were only going to be able to do 100 patients but because of the ice bucket challenge they will be able to do 300,” Emily said. “They are really at the forefront of research into this horrible disease.”
The Hadley’s also have a community page where they are raising funds for the TDI.
“The best way to help is kindly helping fund the disease,” Collin said. “It’s truly not about how much because every amount helps them get there.”
While raising money and awareness for ALS, the Hadley family is also doing their best to knock off as many items as possible from Collin’s bucket list.
“The bucket list is awesome,” Collin said. “I have a trip planned every month between now and next august. I’m still trying to convince everyone that skydiving is a good idea.”
Next up on the Hadley’s list is a trip to Hawaii in November.
“Since we don’t really know how quickly things will progress, we’re trying to cram a whole lifetime of memories into right now,” Emily said. “We hope that we really have three, four, five years to do these really great trips, but in the event that we don’t, we’re going to try to fit in as much as we can right now.”
While there is no known cure for ALS, Collin said it’s just a matter of time and research.
“It’s not an incurable disease, it’s just an underfunded one,” Collin said. “Hopefully one day it won’t be an incurable disease because it will be well funded.”