USIA Angels

USIA Angels

Helping children during a difficult time in their lives. That’s what USIA Angels is all about. At USIA, while we believe wholeheartedly in a strong work ethic, we also understand just how vital it is to a child’s development to play in the water. Probably some of your fondest memories of childhood revolve around a river, lake or the ocean. We, all of us, simply have the need to splash and swim and do whatever else tickles our aquatic fancies (SCUBA, anyone?). We should know. We build the equipment that enables many people to enjoy the water where they otherwise could not. Usually we make dryuits for cold water divers. However, there are others, children with special needs, who we often try our best to help get off terra firma. What follows is a list, not comprehensive by any means, of some of our USIA Angels, who they are, and how they were helped by our suits.

 

 

Little Miss Lennox

 

USIA Angel Lennox

Mandi, we wish to thank you and your amazing team at USIA for your generous gift. The dry suit is fantastic! It is so cute and so well crafted. We were amazed at your thoughtfulness when we opened the package and found the note and picture drawn especially for Lennox. Lennox loved the picture and she loves her suit!

USIA Angel Lennox

Because of this suit, Lennox and her family were able to resume their favourite summer activities. Despite having a full body cast that cannot get wet, Lennox could enjoy the beach, family pool, cottage, splash park, and yes, even the bath tub! (She insists on donning her suit in order to “take a bath” and play with her tub toys!)We cannot imagine what this summer would have been like without Lennox’s dry suit. As well, we are thrilled that this suit is designed to last throughout her medical treatment which could be several years. Her journey has definitely been made easier by having it.

Lennox is a happy little girl. We are continuously amazed with her positive outlook and joyful attitude. Having a USIA dry suit has most certainly contributed hugely to her well-being since she has been able to adapt to her physical limitations and continue to participate in all of the water activities she loves.Once again, we wish to thank you and your wonderful team at USIA for your generosity. We have included some photos so you can see how much Lennox is enjoying her suit.
 
~Brenda HollettLennox Cybulski-Hollett’s Grandmother

 

 

Finn Nobrega

Dear Tripp, Lori, Mandi and USIA team

I want to thank all of you from the bottom of my heart for what you’ve done for our son.

Finn was diagnosed with progressive infantile scoliosis at 6 months of age. Early treatment is crucial with this
condition and involves having a series of casts for the next 1 to 2 years.

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We are a family who spends most of our time off by the water, whether it is at one of the many beaches in our home state of RI or spending time at our favorite lake in NH. In May ‘18, Finn’s first cast was applied and my frantic search to find a drysuit that would fit my 15 month old baby began. That’s when I came across your website and I saw that there were children in customized dry suits made by your amazing team. I first spoke with Tripp who explained to me more in detail about the USIA angels… What your company does for these children is absolutely incredible. You’ve given my son and many other children a sense of normalcy and freedom around water they wouldn’t otherwise have.

I want to thank each and every one of you involved in the making of Finn’s drysuit. We are forever grateful for your generosity, hard work, and beautiful craftsmanship.

With all our love and gratitude,

-The Nobrega Family

 

Sophie Abernathy

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In this post, we have the very special distinction of making the acquaintance of a remarkable little girl named Sophie Abernathy. We could tell you her story, but that job is best accomplished by Sophie’s dad, Jason…

"We knew something was off when Sophie was about 6 months old.  She hadn’t rolled over yet and could barely lift her head.  She couldn’t even sit up until about 9 months old.  When she did, we started to notice she would slump in one direction.  It was around this time that her pediatrician diagnosed her with muscle hypotonia, or low muscle tone (the amount of tension or resistance to stretch in a muscle).  After all the really bad stuff was eliminated (spinabifida, MS, etc.), it was found that she had a rare genetic mutation called 16p11.2 chromosomal deletion that caused the hypotonia.  We started physical therapy (among other additional therapies) right away, but around 12 months old, she was diagnosed with progressive infantile scoliosis.  At about 13 months old she was put in a Risser/Mehta cast that covered most of her torso from the hips to below the armpits.  Funny as it sounds, I think getting the cast was harder on us than it was on her.  She just accepted it and didn’t let it slow her down, but my wife and I knew she absolutely loved being in the water.  It was killing us because we were certain that the next few summers would be spent indoors, with the occasional break at the lake or beach in between castings.

"Back in March was when I found the USIA Angels website and immediately sent an email.  Everyone at USIA has been so helpful answering my questions and especially in helping me size the gaskets.  Here are a few pictures of her the first time she wore the dry suit.  She loved horsing around with her friends in the kiddie pool and could not get enough of sliding down the inflatable water slide and going face first into the splash-down pool.

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My wife and I aren’t the only ones that appreciate the dry suit though.  We used the suit again this past weekend and had it hanging in her bathroom to dry.  After she was done brushing her teeth, she looked up and saw the suit hanging over the curtain rod.  She excitedly pointed up to it and said “Puhpuh (purple) suit!!!”  I said “Yeah!  That’s your purple suit!” to which she responded by turning around with a huge grin on her face and said “I love my puhpuh suit!”  To which I responded by very nearly falling over laughing.  She turned off the light and walked out of the bathroom, but then she stopped in the hall, turned around and said “Good night puhpuh suit,” and blew the suit a kiss.  Next to the day she was born, that suit has given us some of the happiest memories with Sophie that my wife and I can recall.  We look forward to getting many more uses out of it, and we’ll be sure to send more pictures.  Again, thank you from the bottom of our hearts.

Sincerely,

Jason, Kelly, Sophie, and baby Lucas.

 

Brandon Chorney

In this edition of USIA Angels, we meet Brandon Chorney, a very courageous 4-year-old who has been dealt a tough hand in life. Here are the words of Brandon’s father, Daniel.

Dear USIA-

I hope this letter finds you well! I first wanted to sincerely apologize for this note being way overdue. In February, you provided my 4 year old son, Brandon, with a dry suit to go over the Mehta cast he wears for Scoliosis.  Brandon also has a rare genetic syndrome called Prader Willi Syndrome in addition to having moderately severe Scoliosis.  He has been getting Mehta casts every 3-4 months since he was 2.5 years old and this has been a very difficult process. One of the hardest aspects of his casting is not allowing him to enjoy water. What kid doesn’t grow up remembering how much fun they had in baths, swimming pools and playing in the ocean?!?!  It has especially been difficult when we travel to warm places or head to the beach on weekends with our extended family.

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When I found your company online and called to ask about your dry suits, you not have been more kind and understanding.  I was brought to tears when you told me about the “USIA Angels” which provided Brandon with a FREE dry suit! In February, we travelled to Florida with our family and Brandon was able to enjoy all the fun water activities that every kid should! He went swimming in the pool and was thrilled to play in the ocean. Over this past Memorial Day weekend, we were also able to use the dry suit at the Jersey Shore with family and Brandon LOVED running up and down the beach and being pulled through the waves on a boogie board with his cousin.

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We seriously cannot thank you enough for your generosity!!! You have helped us regain enjoyment in these simply activities and we are forever grateful.  We need more generous organization like your that make lives easier for children with special needs and their families.

We’ve attached some pictures so you can see Brandon enjoying his dry suit!

With sincere gratitude,

The Chorney Family

(Samantha, Dan, Brandon and Leah)

You are very welcome, Daniel and Brandon. While USIA is a small company, we have big hopes for Brandon and all of our USIA Angels.

 

Noah Ervin

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Some kids take to water like it's second nature. Being a dry suit and bag manufacturer, we know firsthand the pure joy some children get from watersports. Splashing, wading, swimming, playing—it’s all good. But for some kids, playing in the water is an inaccessible dream. Whether it’s an illness or something else holding them back, getting wet is off limits. 19 month old Noah Ervin is one of those water-loving children. According to his mother, Amanda, Noah showed clear signs of his love for the water early on in his life. However, due to his medical condition, he cannot get his chest wet.

Here are Amanda’s own words:
“Noah has a very rare genetic disease called trichohepatoenteric syndrome (THES)…Because of his condition he has a central line (also known as a Broviac line) in his chest that ends at his heart and is used to deliver nutrients and fluids directly to his veins so he can grow. Without this, he couldn’t survive. The problem with the line is that it can’t get wet because of infection risks leading to sepsis.”

Amanda goes on to say that she has attempted many different DIY dry suits for her son. First, she tried to cover Noah’s chest in multiple layers of plastic wrap with lots of medical plastic dressing plus moisture indicator paper inside to warn her in case the whole setup got wet. With this arrangement, Noah was able to enjoy the water for “a little over a minute” before his dressing became saturated. Not satisfied, Amanda didn’t stop there. When the first attempt failed, she tried to put Noah in a waterproof rain jacket with the wrists and waists sealed as much as possible. While this method has yielded limited success (he was able to play for 20-30 minutes before his dressing got wet), Amanda came to the realization that she needed to obtain a dry suit for Noah so he can enjoy extended periods of time in the place he loves best—the water.

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Said Amanda:
“My 6-year old daughter begs me to take her and Noah to swimming pools or to let them play in the rain together, but I continuously have to explain to her why he can’t go into the water…Noah is unable to enjoy things like food, but he LOVES water. I would love to make it possible for him to enjoy longer periods of time in the water, so my request is…do you make custom dry suits for extra small children?”

Yes we do, Amanda.

 

Parker Juricek

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Infantile scoliosis. It’s not entirely life-threatening. In fact, many children who have been diagnosed with the disease can have a normal quality of life with the proper treatment. However, there is a treatment time, and if you know anything about children, it’s that they aren’t exactly the most patient people in the world.

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I write that to introduce you to Parker Juricek. In March, 2015, at the age of 2, little Parker was diagnosed with infantile scoliosis. The condition is still a mystery to modern medicine as to what are the causes. But there are effective treatments to the disease, and one of them is being fitted with a full torso cast. That was in March. Fast forward a few months and we are in the heart of summer, when kids are out running through sprinklers, racing down waterslides, and frolicking at the local pool. Parker’s mom, Jonelle, didn’t want her to miss any of the summer fun. So she decided to do something wonderful for her daughter. She looked for a dry suit manufacturer who could customize a suit for Parker. Here’s Jonelle in her own words…

Parker is a 2 year old girl diagnosed with infantile scoliosis in March of 2015. She had one treatment option with was being casting. The casting process / technique is Mehta Casting and lasts for approximately a year. The cast is a full torso cast going from her chest to her hip and is changed every two months. The cast is made of plaster and fiberglass and and unable to get wet. As you can imagine having a two year in Texas who loves to swim, play in the water, and take baths this was going to be a game changer. After this settled in, I started focusing on how can she play in the water instead of she can’t play in the water. After multiple Google searches, I was empty handed. Then I thought wait what about a dry suit….do they make those for toddlers? (I am an open water diver. I have never dove in a dry suit but know about them.) That’s when I found a similar USIA Angel story about another little girl with the same condition as Parker who was able to enjoy the lake with her family. At that point, I just emailed and ask your customer service department to ask if your company would be willing to customize a suit for a 2 year old. They then placed me in touch with Lana. USIA was a complete blessing to Parker’s summer.

Although the suit is not the most enjoyable article to put on, once Parker has it on and is able to swim, the rest is history. She is the smiling, water loving, happy toddler! Our family can’t thank USIA enough for giving our angel the gift of a USIA dry suit and allowing her to become a USIA Angel.

What an infectious smile!

Jonelle and Parker, we at USIA have warm hearts knowing that you are happy with your new dry suit. We can’t begin to put into words what it means to us. Please have fun, be safe and, most of all, Godspeed on Parker’s recovery.

Source: www.srs.org

 

Renvek Larson

Six year old Renvek Larson is quite the celebrity. Just do a quick Google search and you will see him dancing with a Mariachi band in Portland, playing on a jungle gym in New York City, and preparing to board a plane in Seattle. His story can be found on websites from news agencies around the world, pictures and videos of his warm little smile. He has an infectious smile. He is an honorary member of said Mariachi band. He loves music. And he has ganglioneuroblastoma.

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It’s an ugly name for an ugly disease, one that affects only 5 out of 1 million children a year. The youngster from Alaska was diagnosed in 2012, and has a series of triumphs and setbacks over the last three and a half years. It has been a journey that has taken Renvek and his family all over the country to seek out treatment. And now, after the ups and downs, after the cancer went away and came back, after the doctors told his family to prepare for a “low chance of survival,” there is hope with a new antibody therapy.

And now that Renvek is feeling a little better, now that he is gaining a little weight and the feeding tube is gone, Renvek wants to splash around in the waterslides at Disneyworld. But he has to keep the IV port on his chest dry and clean. That’s where USIA comes in.

USIA learned about Renvek from our friends up at Alaska Mining and Diving Supply. We heard that Renvek had a wish. He wanted to swim and play just like all the other kids at Disneyworld. We didn’t hesitate. Donating dry suits to children with special needs is something near and dear to our hearts. Renvek is no exception.

Renvek didn’t have a lot of requests for his new suit. His mother told us the only preference was that it had to be his favorite color: blue. So the factory got to work, putting together a blue base layer suit with blue camo accents. Very stylish!

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As Brian from Alaska Mining and Diving supply says, Renvek just loves his new suit. And something tells me that when he gets to Florida and sports his new dry suit at the waterpark, he will be the envy of every other kid there.

You have new fans in USIA, Renvek. We’re pulling for you.