CANADIAN, Texas (KAMR/KCIT) — Carter Guillen, is an eight-year-old from Canadian, born with Dandy-Walker Syndrome.
Dandy-Walker Syndrome is a malformation of the cerebellum, that impacts the neurological system.
Pam and Juan Guillen’s doctors notified them of concerns, and the Guillens stood firm in their faith and leaned on each other. They never considered abortion but instead focused on the positives and information their doctors gave them.
“We didn’t really know what he wouldn’t or would be able to do until he started missing those milestones or hitting them,” said Pam Guillen, Carter’s mom. “So, it became more apparent as he got a little older.”
The Guillens shared that Carter came home with a feeding tube and was almost a year and a half before he could sit up unassisted.
“It was three months that we were in the NICU,” said Juan Guillen. “I was always got told that God picks the people that he wants to have kids. So, I guess we were one of them that got picked.”
The Guillens initially brought Carter home from the hospital when he was around three months old, continuing with therapy and medical treatment. To many, Carter is the community’s kid and throughout his life, he’s had the support of family, friends, and the Canadian community.
“When he first came home, we had a feeding tube, said Pam. So, we taught the staff at the Little House, which is the daycare, how to change those things out and all that. He’s kind of always been like this community kid, everybody’s familiar with him. Everybody’s familiar with his story.”
Now through therapy, Carter is able to walk with the assistance of a walker. Carter has learned to take several steps at a time independently.
Also, impacted is Carter’s speech. He is primarily non-verbal but uses sign language and is able to communicate with his family and friends.
“He also has his kind of own little language, we always talk about it,” said Pam. “When you have babies, and they start jabbering, the parents always know what they want, or what they’re saying. He’s kind of the same way people that are around him enough. He’s so smart. He retains everything.”
The need for a home and path forward:
Now eight years old, Carter and his family are in need of a new home, as the home they are currently renting is being sold. Before Carter was born the Guillens had savings to build their home. However, within six months of Carter’s life, the Guillens used all of their savings to cover medical costs.
When the Guillens found out their current home was being sold by the owners, they started looking for other options in Canadian.
“There’s not a not a plethora of rental property available in Canadian that would suit their needs,” said Melissa Bundy, Organizer for Shared Purpose: The Guillen Project. “So, in the meantime, they were going to have to live in a camper, and the camper situation fell through. I just had this tug on my heart, like hey our community needs to do something, we can do this.”
From there Bundy got to work, she talked to her husband and life group, sharing her idea to help get the Guillen’s into a house to call their forever home.
“I was like, hey, ladies, I have an idea, said Bundy. I just need y’all to say yes. So every one of them was like, yeah, what are we doing?”
That’s when Bundy shared her idea.
“We started talking about the project and they got so excited, the Guillens are such an important part of our community,” said Bundy. “They volunteer for absolutely everything, they always show up. They’re just amazing people. Carter is just a little piece of all of ours. Everybody wanted to dive in and help.”
A Shared Purpose: The Guillen project will focus on the Guillen family. For Bundy, this is just the beginning of helping unite the community, help their neighbors and encourage revival.
Bundy continued, “Canadian is family. The Texas Panhandle is family and when there’s a need we pull together, and what an amazing opportunity to start something bigger than just the Guillens. What an amazing opportunity to talk to our neighbors and our community about potentially starting something that can last into the future, and maybe doing a nonprofit thing. It just really benefits so many people, and brings revival back to our community that spreads across the Texas panhandle.”
The committee for A Shared Purpose is established and is now moving into the fundraising stage. Bundy shared they have already had people donate their time and resources.
“We have so many incredibly talented people here in the community that have already volunteered to donate their time, their resources, their machinery, other pieces of equipment,” said Bundy. “We have amazing contractors, dirt workers, you name it.”
A Shared Purpose will plan to host several fundraisers that potentially include a beef raffle, auction, selling t-shirts and a pass the bucket.
Additionally, a Gofundme was created for online donations. Monetary donations can also be made out to the Canadian Ministerial Alliance at The Canadian Ministerial Alliance, Canadian TX, 79014.
For other ways to help individuals can contact Melissa Bundy through email at email@example.com.
“Aside from the fundraising, there are so many people that have God-given talents that just want to share their gifts and maybe financial resources aren’t available,” shared Bundy. We are accepting that as well. Anybody that just wants to be a part of this, as we grow it.”
A major factor required to build the Guillen home is that it must be ADA-compliant to meet the needs that Carter may have in the future.
“We need to take into consideration that moving into the future we don’t know what that looks like,” said Bundy. “The wide doors, very open floorplan making sure that the bathrooms are equipped for his to meet his needs.”
Bundy continued, “We actually have a floor plan that is brilliant and seems to be the direction that is appropriate. We are you’re definitely being diligent through that process and make sure that we will meet all of those needs moving into the future.”
Carter has two older siblings and with the uncertainty of Carter’s future needs, the house will also be a place for the entire family to call home in case they step into the caregiver role.
“There’s no reason that one day he can’t walk independently without his walker, but we don’t know when that would be, and we don’t know if his dandy Walker would create more issues in the future,” said Pam. “We’re definitely we make decisions based on his quality of life moving forward because we just don’t know that he’ll ever live independently without having to have caretakers.”
The Guillens shared that until six months ago Carter slept in their room. In addition to the Dandy-Walker Syndrome, Carter also has a seizure disorder that worsens at night.
The transition into his own room was difficult for their family. In addition to an open floor plan with everything on the same level, the Guillens will also need technology to help monitor Carter when he is alone.
Throughout the design process, the Guillens and Bundy have consulted Carter’s care team to ensure the house is equipped to suit his needs.
“We are lucky enough to have amazing therapists and stuff to get their feedback, said Pam. “When it comes to designing his room or doing certain things in his room, we’re hoping to really be able to implement therapy-type things related in his room to be able to help him.”
The Guillens shared that throughout their journey they’ve hit the highest of highs and lowest of lows together. As parents, they have sacrificed time with their older children. Their eldest son is in college and their daughter is in junior high.
Through all of their trials, the Guillens firmly believe that it is a blessing to be his parents.
“God chose us to be his parents, because obviously we were good enough to be able to take care of him,” said Pam. “So, it’s pretty humbling that things could have been a lot worse. I think that it’s all about perspective and how we look at them to realize how happy he is and how amazing he is.”
Pam has lived in Candian for her entire life and has spent years working at the hospital, Juan is a volunteer firefighter. Even in their toughest times, they have continued to give to the community in any way they can.
“They both have such giving hearts,” said Bundy. “They’re the first ones that show up anytime there is a need. They just want to help and make a difference. This product is so much bigger than just their family. It’s helping so many families in the future that have needs that maybe we can meet.”
As the project continues to move forward the final home reveal will be a surprise for their family. The generosity of the community brought the Guillens to tears.
“There’s no words to describe how that makes you feel as a person, as a family as a couple that people think so much of us, and that they care enough and want to do that, for us,” said Pam. It’s just very humbling.”
The Guillens shared that with a new home, they’ll now be able to do more for the community and help the next family impacted by a Shared Purpose.
For updates on the project and more on their story, individuals can follow the Facebook page “A Shared Purpose: The Guillen Project”
Donations can also be made to: The Canadian Ministerial Alliance, Canadian TX, 79014.
For more information on how to help, contact firstname.lastname@example.org
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