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Jane Stefanik, The Hemi Foundation Northeast Regional Director, has put together an exciting musical event, featuring some outstanding musical guests from her area. It will be a family-friendly event, so COME ON OUT! The Event will take place on Sunday, February 28th at 3:00PM at Bourbon Street Near Downtown Baltimore. The performing bands will be Starcrush, Broadcast, and Quikfire and will be emceed by Tyler Daniel from 103.7 FM. Some special give-aways include AirTran Airline Tickets, Baltimore Orioles Autographed Ball and Glove, and Much More!! So if you live in the Washington D.C. or Baltimore Area, or within driving distance come out and listen to some good music and support The Hemi Foundation. Cris and Kristi Hall, Co-Founders of The Hemispherectomy Foundation, are flying in from Texas for the event and hope to see you there. For More Info, Click Here or Contact : Jane Stefanik Jane@Hemifoundation.org |
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The Hemispherectomy Foundation and Parker County Physical Therapy will host a 5K and 1-mile fun run/walk on Saturday, May 15. "Dreams on Wings" will honor Aledo's Jessie Hall, a second grader who underwent radical surgery in which one half of her brain was removed. All proceeds from the event will benefit The Hemispherectomy Foundation, a non-profit organization dedicated to providing emotional, financial and educational support for individuals and their families who have undergone or will undergo a hemispherectomy, or similar brain surgery. "The 2009 Dreams on Wings 5K was a great success! The foundation was able to raise just over $7000 for the children that we support. Best of all, 10 families with children that have undergone hemispherectomy surgery attended the race! Not one family had ever met another family that has walked in their shoes! Can you imagine that?," said Kristi Hall, race chairwoman and president/ CEO of The Hemispherectomy Foundation. The 1-mile fun run will start at 8:00 a.m. followed by the 5K at 8:30 a.m. Both races will start at Parker County Physical Therapy located at 879 E. Eureka in Weatherford, Texas. Individual awards will be given for overall and masters male and female winners, plus the top three male and female finishers in the following age groups: 5 and under, 6-8, 9-11, 12-14, 15-19, 20-24, 25-29, 30-34, 35-39, 40-44, 45-49, 50-54, 55-59, 60-64 and 65+. Awards will be given for the largest Corporate, School and Family Teams. Participants can register online at www.hemifoundation.org (no fees!) or download registration forms. Early registration ends May 9. The pre-registration cost for adults is $25 and $30 on the day of the race. For children under 6-12, the pre-registration cost is $20 and free for children ages 5 and under. Teams of 3 or more can register for $20 per individual. New this year! Sleep in and get the t-shirt! Virtual Runner $30. Registration forms and checks, made out to The Hemispherectomy Angels, Inc., can be mailed to The Hemispherectomy Foundation, P.O. Box 1239, Aledo, TX 76008. For More Info, Click Here or Contact : Kristi Hall Kristi@Hemifoundation.org |
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Holly Paauwe, The Hemi Foundation Specialty Director of HME/CD is one busy person these days. Besides being a director at The Hemi Foundation, she also runs the HME Family Support Network, and finds time to be with her family, John, Caiden, and Avery (Left Hemi 2006, 2008 HME) 
But right now Holly's focus is on putting together The Hemi Foundation Family Retreat this summer. This retreat is for everyone in the family and is going to be a GREAT chance for us Hemi families to hang-out, socialize, and enjoy the long weekend together.
Although there will be a few speakers, this event is focused around the word "Retreat". It takes place at the beautiful Jameson Camp in Indianapolis, where you will feel like you are back in kid's summer camp with no cares in the world. Camp Fires and Cabins will take you back to summer camp and build treasured memories. Although you may feel like you are miles from nowhere, this camp is near all the modern conveniences that we need for our special families. And if Summer Camp isn't your thing, you can always stay at a nearby hotel and come out for the family activities. It's close and convenient.
There will be a special surprise this year, as the Epsteen Family will be filming The Hemispherectomy Foundation Family Video to be used for Public Relations, Education, and New Family Support. We hope to see ALL of YOU there in July! For More Info, Click Here |
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 International Hemispherectomy Workshop
Sept. 30th - Oct. 2nd, 2010
Utrecht, Holland
(continue from Previous Edition of Brain Matters, Article by Stella de Bode, PhD)
Another topic I wanted to share with you is the fact that we are organizing the First International Hemispherectomy Workshop, "Why Would You Remove Half a Brain?" in 2010 (9-30 to 10-2). I already have UCLA, Cleveland and John Hopkins confirming their participation in addition to a number of European centers. We will discuss all aspects of hemispherectomy: from indications, techniques and how not to miss a child who can clearly benefit from such surgery to outcomes and therapy. We will also hold a satellite session for parents. I have high hopes for this workshop. I hope it will unite all of us around the globe to look together for even better information and methods. I believe, this will translate into new approaches and, ultimately, more saved lives, better quality of life for more children. I would like to invite you to spread a word to your neurologists and therapists about our Workshop in the University Medical Center Utrecht. Utrecht is one of the largest Dutch cities and is only 40 minutes from the Amsterdam airport. If you decide to come and need a place to stay you are always welcome in my house! I am considering opening a forum to collect your questions and concerns so that a panel of specialists during the workshop would answer the most frequent questions. If you think this is a good idea, please, write to me, and I will collect and process all questions.
Thank you all of you, my warmest wishes in 2010 and much love,
Yours, Stella
Stella de Bode, PhD (UCLA)
Current Position: Ass Prof & Sen Researcher at the University Medical Center Utrecht, Netherlands
E-mail <sdebode@ucla.edu>
Specialization: brain reorganization following pediatric surgery |
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Our Mission
To Encourage and Support impacted families by connecting them with other families who have had a hemispherectomy or similar surgery.
To Work together with medical professionals to fund research into the cause of the diseases that lead to intractable epilepsy, hemispherectomy, and the surgery itself.
To Raise Money for camp fees, scholarships for trade schools and higher education as well as provide financial relief for struggling families Read stories of hope about our families on hemifoundation.org hemifoundation.org |
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Meet Our Medical Advisory Board
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Greetings!
This Edition of Brain Matters is dedicated to our families and all that they do to support the organization that supports them. Each of our families have been through trials that would be bring the strongest to their knees, yet somehow they manage to move forward with their lives. Sometimes they not only move forward, but go on to do amazing and miraculous things. I'm talking about the kids AND the parents. We are so proud of all of them.
This edition highlights some of our amazing kids, and our amazing families and what they have done for themselves and for The Hemispherectomy Foundation.
Hope in One Hemisphere!
 Cris Hall
Co-Founder, The Hemispherectomy Foundationand Jessie's Dad (Right Hemi, 2008) |
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Westlake Restaurant Fundraiser to aid Kids with Brain Disorders
By Rachel McGrath
The parents of a little boy who has had the right side of his brain removed are hoping the local community will help celebrate his third birthday by coming out to raise money today for a nonprofit that helped them through tough times.
Jack and Julie Epsteen of Westlake Village say the Texas-based Hemispherectomy Foundation was their main resource in helping cope with the challenges facing their son Levon, who turned 3 on Friday.
"Levon was born with a right-brain malformation which caused him to have a lot of seizures," said Epsteen, 41, an executive producer for an advertising agency.
"We noticed he wasn't using the left side of his body and it turns out that part of his brain didn't form correctly in utero."
When medication failed to stop the debilitating seizures he suffered, the only other treatment option for the little boy was a hemispherectomy, an operation to remove the right side of his brain.
In May 2008, at 18 months old, Levon underwent the procedure under the direction of neurosurgeon Dr. Gary Mathern of UCLA's pioneering Pediatric Epilepsy Program.
Since then, Epsteen says, his young son has been free of seizures, although it has left him with physical and cognitive challenges.
"He'll walk with a limp probably his whole life and he won't have any motor skills on that left side," Epsteen said. "He has challenges but he lights up a room."
The Epsteens wanted to celebrate their son's birthday by giving back in some way. They decided to use the occasion to raise money for the Hemispherectomy Foundation.
Begun by a Texas couple, Cris and Kristi Hall, whose 6-year-old child underwent a hemispherectomy after being diagnosed with Rasmussen's Encephalitis, the foundation describes its mission as serving children who undergo the procedure "and their families, who are so greatly affected."
The foundation also raises money to help with the costs of additional medical equipment, extended therapy and other needs not covered by insurance.
Epsteen, who regularly dines at Romio's Pizza and Pasta in Westlake Village, said the restaurant agreed to donate a percentage of every meal sold or delivered today to the foundation in honor of Levon's third birthday.
Paul Lesser, owner of Romio's, said he already donates 10 percent of the total daily net sales from Monday, Tuesday and Wednesday each week to local schools, and he was happy to help out Epsteen.
"His son is a miracle," Lesser said. "He's a regular customer who told me about the surgery his son had, and he had an idea for holding a birthday party for his son to raise money. And I said it's right in line with what I'm doing with my business so let's just do it."
Rachel Waters, a graphic designer in Glendora, serves as the western regional director for the Hemispherectomy Foundation, which is barely a year old. She hopes people will support the Epsteens and the day-long fundraiser at Romio's restaurant.
"I think it's extremely important for families affected by this surgery to get involved and raise awareness. Who else is going to do it?" said Waters, whose 6-year-old son underwent the same procedure as Levon in August 2008.
"We are a new foundation and we have hardly any funds," she said, "but we have specific goals in mind for what we want to do with the money we do have."
Waters says the nonprofit's staff donate their time for free, and all money raised for the foundation goes toward helping children and their families, providing scholarships for school or camp, enabling families to meet with others and paying for costs not covered by insurance such as extended therapy and medical equipment.
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Abby Apitzsch's 4-H Presentation
I first had the pleasure of Meeting Abby Apitzsch in May of 2009 at the Hemi Foundation Dreams on Wings 5K. I was immediately impressed with this young lady, and even more so when I found out that she was a straight-A student in Centerville, Texas.
Abby is 13 years old, in 4-H, and UIL One-Act Play. She had a right Hemispherectomy in 2001 at UCLA for seizures due to Rasmussen's Encephalitis.
Here is a video of Abby doing a presentation about her 4-H project, to her 4-H Club. Abby will be collecting items for The Hemi Foundation Hospital Hemi Hug Program. The Hospital Hemi Hug Program delivers care packages to children who are in the hosptial for hemispherectomy or other procedures following hemispherectomy.
Good Job Abby!!!
Click Here to Watch Video
or go to:
http://www.youtube.com/watch?v=sL3htkyjMrw |
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Meet Zach
By Mary Lou Meier
My name is Zachary Meier. I am 9-years-old and am in 2nd grade in St. Joseph, MO. I have 1 sister, Lexi, who is 7-years-old and in the 1st grade. My mom and dad are Jason and Mary Lou Meier. My dad sells food processing equipment and my mom is an Occupational Therapist.
November is my favorite month because I celebrate my birthday, Thanksgiving and the anniversary of my last seizure. Before November 2006, I had really bad seizures because I was born with a condition called neuronal migration disorder. I took medicine daily to prevent me from having seizures, but still had seizures. Every night before I went to bed my parents and I prayed for no more seizures.
In November of 2006, my doctor sent me to the Cleveland Clinic in Cleveland, Ohio. I had many tests to find out that the right side of my brain was where the seizures were coming from. On November 16, 2006 I had a 5 ½ hour surgery to remove the right side of my brain (a right anatomical hemispherectomy). The surgery went well. The right hemisphere controls the left side of a person's body, so the left side of my body was weak after surgery. I also lost my left peripheral vision. I started Physical, Occupational and Speech therapies to learn how to walk, use my left arm again, strengthen my facial muscles and remember to look to the left. My left foot was weak, so I had to wear a brace on my left leg to help me walk without tripping over my toes. I had PT, OT and Speech therapy in the hospital a couple days after surgery until I was sent home a few days later. Then I went to a hospital closer to home (Children's Mercy in Kansas City, MO) and had inpatient therapy there for 10 days. After that I started outpatient therapy at the Rehab Institute in Kansas City, MO. My dad took me Monday through Friday; we were there from 9-3. It was hard work, but I had great therapists who helped me progress every week. I went back to school 3 days a week in February and continued therapy 2 days/week until the end of the school year. We did a lot of therapy at home, too. My mom is an OT so she made me work extra hard at home, too, using my left hand to pick up my toys and doing the exercises my therapists gave me.
So much has happened since my surgery. I don't take medicine for seizures anymore (it took a year to wean me off my anti-seizure medication) and I have been seizure-free for 3 years! I still have to learn how to do things for myself, since the left side of my body is still weak. But my left leg has gotten stronger, so I don't have to wear a leg brace anymore! I take medicine to help relax the muscles in my left hand and leg, as well as take medicine to help me focus in school. My left arm and hand will always be weaker than my right, so I learn different ways to do things. I still have PT, OT and Speech at school and do exercises at home. I still have fun and do things that most kids my age do, though. I love playing video games and sports. I am on a Special Olympics bowling team and basketball team.
November is definitely my favorite month. I have fun celebrating my birthday, Thanksgiving and, last but not least, celebrating being seizure-free. Now every night before I go to bed, I thank God for no more seizures!
Zachary's 9th Birthday Party
Zachary was born with neuronal migration disorder. He had life threatening seizures from the age of 16-months until he was 5 years-old when he had a right hemispherectomy in November 2006 at the Cleveland Clinic.
The months leading up to his surgery we were put in touch with a family whose daughter had gone through a similar surgery, and we found a support group online, which were both very helpful in preparing for possible surgery and answering our questions after it was over. But the Hemispherectomy Foundation did not yet exist in November 2006. When we heard the Hemispherectomy Foundation had been established by Jessie's parents, we were thrilled. It was something my husband and I both thought was needed, and were so thankful someone took the initiative to start it and expand it to include an informative website, medical personnel, prayer requests, scholarships, care packages, etc...to the helpful organization it is today.
A few months ago, our daughter, Lexi had been invited to a birthday party but instead of bringing gifts the family requested donations to St. Jude's. I called and asked the mom if she had any personal experience with St. Jude's and she said no, but that their family had always donated to St. Jude's as they felt it was a good organization. This family's support of an organization that had no personal impact on their lives inspired our family to ask for donations to the Hemispherectomy Foundation in honor of Zachary's 9th birthday and 3rd year anniversary of his surgery.
We contacted the Hemispherectomy Foundation and requested 10 brochures. We received the brochures within a couple days and enclosed them in Zachary's bowling party invitations, with a special note to please consider donating a gift to the Hemispherectomy Foundation in honor of Zachary's 9th birthday and 3rd anniversary of his surgery instead of bringing a gift for him. We had parents call and ask, "are you sure he doesn't want a gift?" We assured them that Zachary was more excited about having his buddies go bowling with him and that he knew the gifts were going to the foundation instead. Zachary's special ed teacher even attended the party and said she talked to someone very helpful at the Hemispherectomy Foundation. One child did bring a gift and we heard a couple tell Zachary, "I'm sorry I didn't bring you a gift." Zachary response, "that's okay! Let's bowl!" It truly was a win-win situation for our family. Zachary had fun celebrating with his friends and money was donated to a good cause. We don't know how much money was donated, but we know that what was donated will last longer than the latest toy. My husband and I also joked that Zachary's party was less work this year (no difficult to open toys, no transporting toys home and no clean up!).
Mary Lou Meier
Mom to Zachary, age 9 (s/p R hemispherectomy 11/16/06) and Lexi, age 7
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Life after the big challenge : Amber Ramirez
By CINDY LANGE-KUBICK / Lincoln Journal Star
Amber Ramirez was 9 when a rare and progressive form of epilepsy began devouring her brain tissue like a hungry Pac-Man, giving her debilitating seizures. Six years later, in 1999, the Lincoln girl's story gained nationwide attention when doctors in Baltimore performed a hemispherectory, removing half of her brain. It was her best chance for a normal life. "I don't want to live with my mom for the rest of my life," she said shortly before her surgery. "God, that's a scary thought." Amber's mom still lives in the little yellow house in north Lincoln where it all started. Amber came back there to recover that summer, a 15-year-old with red hair and freckles like her mom, a girl whose story made CNN after neurosurgeons at John Hopkins cut out half of her brain.
A decade has passed. Sheri Ramirez is at Valentino's, sharing a booth with her only child. They're here to celebrate Amber's birthday -- Jan. 13, 1984. Lucky 13. It was a Friday, the first time. A perfect redheaded girl born at 8:58 p.m. back in North Platte, where Sheri grew up. The second time was a Tuesday. Surgery lasted 12 hours, a team of doctors performing the most delicate of operations on July 13, 1999. Lucky 13, again. Sheri's best chance of getting her girl back.
Amber grabs a tray, balances it with her left hand and heads for the buffet. Her mom follows, sliding two slices of hamburger pizza onto her daughter's plate. Amber lost the use of her right side after the surgery. That was part of the deal. Lose the left side of her brain -- the side that governs speech and movement on the right -- and lose the seizures that started coming without warning when Amber was in the fourth grade, as many as 100 in a day. After surgery, Amber spent a year in therapy learning how to walk and talk again. She returned to school in a vocational training program, and graduated from Lincoln High. She worked in fast food. She worked at a day care. She dated boys. Went to parties. Drove her mom crazy. For a while she lived in the basement of the yellow house. Last summer she moved out with three girlfriends. She got her own apartment after Christmas. "She's working and living on her own now," her mom says. "That's where she wanted to be."
It's a dreary Thursday and Amber tugs at a shop vac with her left arm, a green dolphin tattoo glowing from her bicep. She has a skull, too. And a heart that says "Mom." Amber hits a switch and the vac sucks up dog hair. She works part-time at Canine Design, cleaning up after the groomers. Amber likes animals. She likes kids. She likes her new boyfriend, Steve. She was with friends at a bar this fall when he sat down across the table. She told him about the surgery and the seizures. He thought she was sweet, he said a few days earlier, sitting beside her on the couch in her mom's yellow house. They talked on the phone every night. Sometimes words come easy. Sometimes they get stuck in her mind and she can't pull them out. "I think the language has been the most difficult," her mom says. "Maybe the most disappointing thing for me. Amber yawns. She whispers in her boyfriend's ear. Sheri watches from across the room. For years her life revolved around Amber. Sheri's got a boyfriend now. A good guy, divorced with five kids. A man who cooks and can fix things around the house. She's survived cancer.
Everyone thought they would fall apart that summer, two years ago. Her chemo and radiation, Amber out on her own for the first time. "But we didn't. Did we, Amber?"
The mother hands her daughter a silver gift bag. Happy birthday. Amber pulls out framed picture. "Life is a challenge," it reads along the border. "Meet it." "It's for your apartment," Sheri says. "It matches all your stuff." Next comes a cream-colored sweater. "Is that OK? Amber nods. Amber picks at her pasta. She had pizza for lunch today, she says. Sheri shakes her head across the table. "Seriously, Amber? Seriously?" And guess what, Amber says, giggling. She's going out for pizza again tomorrow night with Steve. "We're going to that one place..." "The Isles?" "Yeah, Isles. It's so good" Steve will drive because Amber never did get her license. That's one goal she never reached. "I think my mom's afraid," she says. Mom and daughter still negotiate Amber's life. But more and more Amber is her own woman. Sheri made a pact with herself this year. She'd let go. Let Amber make her own decisions, her own mistakes. She checks in about once a day. "We complain about our lives." It seems normal. |
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Thank You to our FirstGiving Fund Raisers and Donors!
Avery Paauwe raised $325 through her First Giving fundraising page. She would like to THANK and acknowledge each of the following contributors for their generosity and support of the Foundation's mission: David and Megan Paauwe; Marilyn Alvey; Jeff Eckert; Doug, Ruth and Thomas Jean; Paul, Amy, Emily and Richter Werner; Eli Eckert; John Stek; Joe and Mona Goffinet; and Libby Baur. These people not only believe in her, but they believe in the work that the Foundation is doing for others like her. Many, many THANKS to each of them.
Myles Raupp raised $1010.00 through his First Giving fundraising page. He would like to thank his contributers that help support the Hemispherectomy Foundation: Ryan and Megan, Kyle Ballard, Anonymous, Lynn and Maryann Bettin, Tanya Wagner,Jeanette & Jay VanGelder, Terry and Toni Conwell, Shannon Force, Pete & Dara Wagner, Kellie Hurlburt, Doug and Sue Raupp, Ruthann, Bob and Connie Osinski, Quinn and Erin Harris, Susan Brink, Karen & Del Raupp, and Bill & Nolie Rife.
Aiden Waters raised $150 through for The Hemi Foundation his First Giving page . He would like to thank his supporters Daddy, Anna Phothirath, and Christen for all of their support of The Hemispherectomy Foundation through First Giving.
Jessie Hall raised $675 for The Hemispherectomy Foundation through her First Giving Fundraising Page . A big TEXAS Thank You goes out to her supporters on FirstGiving : Susan and Roger Perdue, Muleshoe, Ms. Michaellene Huckaby, T-Ball Buddies, and The Jennings Family. Thanks so much for believing in Jessie and the work of The Hemispherectomy Foundation. We love you all very much. Hope in One Hemisphere!
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Golf: One-armed champ driven beyond the difference!
 Vincent Biser's journey to the North American One-Armed Golfer Association championship on Sept. 3 -- and qualifying for an international competition next year -- turned out to be a surprise for the Cedarcroft resident.
"All I really wanted to do is qualify," said Biser, 21. "I wasn't expecting to win."
But win he did, topping one-armed players from across North America and securing a place in the 2010 Flightmaster Cup in Britain, to compete against European one-armed golfers.
Biser didn't qualify to play in the finals of the two previous championships, but the third time was the charm, as this year he knocked off a former champion on his way to the tournament title.
The victory may have been a surprise to him, but those who know Biser are familiar with his determination when the odds are against him.
Born with cerebral palsy, Biser has use only of his left arm because he does not have fine motor skills in his right hand. And his vision is impaired.
Nevertheless, while attending Towson High School, the 2007 graduate tried out for and made the Generals' varsity golf team.
In last week's tourney, held at the PGA National Resort in Palm Beach Gardens, Fla., Biser had to knock off golfers one-by-one in the three-day event.
The tournament was performed in match play, which means golfers attempt to win each hole against another golfer.
For winning a hole, the golfer receives 1 point. For losing, it's -1 point.
"(By) my second match, I really thought I had a chance, because that was my hardest match, and I won it, 2-1," he said.
Since his days at Towson High, Biser has been known as a long-ball driver. For the North American tourney, he spent extra time working on his putting in hopes of getting an extra edge to qualify for the final rounds.
It seemed to work.
"I had to work on my stroke a lot to make my putts go into the hole," said Biser, a member of the Country Club of Maryland, where he hopes to become a teaching golf pro.
His lead grew with each round. In the first round, he defeated his opponent by one point to advance to the semifinal round; in the second round, he was 2 points up with one hole to go -- meaning he didn't even have to play the final hole to advance to the finals because his lead was safe.
Then, in the final round at the 15th hole, he pulled away 5 points to the good with three holes remaining -- meaning he couldn't be caught. He had won the title.
"It was a par-3 hole, and I had to hit an 8-iron over the woods, onto the green to pressure my opponent," he said.
But there was no celebratory fist-pump for Biser.
He remained cool, according to his caddy, who was a little more anxious.
"I was a bundle of nerves," said Andy Biser, Vincent's caddy and also his father. "I was more nervous than anybody out there.
"Watching your son perform on a championship course at PGA National (is special)," said Andy Biser. "He played golf against guys who have played it all their lives."
Biser returned home to a hero's reception hosted by his father and mother, Nona Biser, and attended by family, friends and supporters.
Although he beat the field, Biser also made a lot of friends at the North American tourney -- many of whom face physical challenges similar to his.
Founded in 2000, the North American One-Armed Golfer Association was formed to provide a competitive venue for one-armed golfers by playing championship courses throughout North America.
According to the association's Web site, the organization is "designed to promote the positive, inspirational spirit of the goal to individuals that have suffered physical limitations."
Biser seems to fit that ideal to a tee, and now has the opportunity for another big win -- and to make more friends.
The Flightmaster Cup tournament pits a North American team against European one-armed golfer champions in a tournament similar to the Ryder Cup.
The tournament will take place a year from now -- Sept. 24-28, 2010 -- on the Celtic Manor Resort in Newport in south Wales, the same venue as the Ryder Cup.
"I'm really excited about the Flightmaster Cup, and playing in Wales," Vincent Biser said.
The 2010 Ryder Cup will take place three days after the Flightmaster Cup, and that's another bonus for Biser. He hopes to bump into one of his professional golfing role models.
"I hope I meet some of them," he said.
**Vincent Biser had a Right Hemispherectomy as a child, at Johns Hopkins Children's Center, due to intractible seizures from a pediatric stroke. |
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Contact The Hemispherectomy Foundation
The Hemispherectomy Foundation
PO Box 1239
Aledo, Texas 76008
817-307-9880
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