We are Believin in Steven....Join Team Steven!

For: Steven Weil
Organizer: Hap Proesel
We are Believin in Steven....Join Team Steven! (Steven Weil)
of $75,000 goal
100% Complete
Raised by 347 donors

The Story

Eager to take the world by storm, Steven Matthew Weil blessed his parents, Matt & Paige, with his arrival 11 weeks early this past July. At 3 pounds, 4 ounces, Steven faced the challenges of prematurity, along with several additional health complications. Baby Steven was born with Hemifacial microsomia, incurred the most severe type of brain bleed, & developed hydrocephalus to name a few.

After 173 days in the NICU, the very special moment for Baby Steven and his family had finally arrived! Enduring countless pokes, prods, tests and assessments, Baby Steven had convinced the hospital what his parents could sense in their son from very early on that he was ready and willing to take on any and all challenges. After 6 months and 4 surgeries Baby Steven left Lurie Children's Hospital and was finally able settle in to his own crib in his own nursery at home.

While we all hope our precious children are given nothing but softball pitches to practice, Baby Steven has been thrown pitch after pitch of curveballs. Thankfully, armed with a superhero's combination of courage, perseverance & grace bestowed upon him by his parents, Baby Steven has shown an uncanny ability to hit whatever is thrown at him. His nurses, therapists and doctors at Evanston & Lurie Children's Hospitals believe in him; his family believes in him; and, more evidently every day, he believes in himself.

We would greatly appreciate your belief in him and hope you'd become a part of Team Steven and show your support through the “Believin' in Steven” Scholarship Fund.  It is Team Steven’s mission to take nothing at face value. Since Day 1 of Baby Steven's birth he has defied the odds and we will help him to continue to do so. We are committed to thinking outside the box when it comes to the challenges and care for one amazing child and to finding healthcare providers who do the same. We are hopeful that during this journey we will cross paths with other teams and families with stories that resonate with our own and we could think of nothing more rewarding than to positively impact their journeys with any support they may need so that their superheroes can best conquer the world too.

The brain is a marvelously complex and consequently mysterious thing. The brain bleed Baby Steven incurred requires that he create new pathways to do everyday things. This fund has been established to support the range of special care equipment and treatment interventions that will provide him every opportunity to meet every challenge. Such a fund will enable Baby Steven to receive select and innovative treatments that capitalize on the brain’s neuroplasticity through early intervention, allowing him to optimize his cognitive and functional capability by helping him to make those new connections. As you might imagine, this road will be one less traveled and longer than most. At times we’re sure it will be full of tiring steep climbs, stomach-churning dips & grip-tightening curves. But, it is a journey that Baby Steven & Team Steven are eager & determined to travel, and one that will no doubt have countless opportunities to stop and enjoy the scenery and admire the progress.  

With the love and support of everyone who will touch Baby Steven’s life, we are very hopeful that he can achieve every dream he ever dreams and fulfill every adventure our little superhero will conjure up. He has and will continue to make this world a better place because of what this little fighter of ours learns along the way, and he will surely give back to all of us ten fold.

A list of some of Steven’s non-traditional "classes" follows. Your help in providing "scholarships" to any or part of them will be profoundly appreciated.  He is a fighter; he has already surpassed doctor’s expectations; and we believe he has just gotten started!

Payable to Steven Weil
Addressed to
Believin in Steven Fund
21265 W Willow Dr.
Kildeer, IL 60047

Stem-Cell Transplant

1 "Lab": $7,500

Cognitive Restructuring (Anat Baniel Method)

1 "Class": $135
1 Day-long "Seminar": $270
1 Week-long "Workshop": $1,350

Intro to Physical Therapy 

1 Daily "Workout": $30
Week of "Workouts": $150

Intro to Speech Therapy

1 Weekly "Studio": $30

Intro to Occupational Therapy

1 Weekly "Training": $30

Meal Stipend
G Tube Specialists: $50 per visit 

Disposable Cleft Palate Bottles & Nipples: $55 per day
Superhero Food: $75 per day

Extra-Curricular Activities
Play Time Nurse Play Dates:  4/week: $30
Qualified Baby Sitter: $100/night

If you would like to read Baby Steven’s full medical journey you can read the details down below:

Steven was born at just over 29 weeks (almost 11 weeks early) with hemifacial microsomia, a condition on the Oculo-Auricolo-Vertebral spectrum affecting the development of the ear, jaw, vertebrae, and often the eyes.  More critically, seven days after birth, a head ultrasound showed that Steven had sustained a severe intraventricular hemorrhage, a type of brain bleed for which premature babies are at risk. Due to clotting and scarring of the ventricular system, he then developed hydrocephalus, a condition that can lead to fatal pressure in the brain.  Additionally, the extent of the bleed caused periventricular leukomalacia damage, a type of brain damage surrounding the extent of the bleed.  Paige, Matt and Steven’s care team made the difficult decision to have Steven go under a second brain surgery to receive a shunt to control the fluid supporting his brain. Due to the damage incurred, doctors informed Paige and Matt that Steven may not walk or talk. With the bleeding in his brain regulated, the care team focused on his ability to feed and breathe on his own.

Steven then showed signs of severe acid reflux. After trying various non-surgical changes, including formula changes and feeding tube positioning, he underwent a third surgery to have a gastronomy tube (G-Tube) inserted directly into his stomach through his belly so that he could receive nutrients while the speech therapy team continue to work on oral feeds.  But we weren't quite done yet...

Oculo-Auricolo-Vertebral spectrum disorders are a collection of related congenital defects occurring in the first few weeks of gestation, usually affecting only one side of the face. In Steven's case, in addition to vertebral malformations which may lead to scoliosis, his jaw was underdeveloped.  This pushed his tongue into his airway, creating an obstruction which prevented him from breathing safely on his own. In lieu of a tracheostomy (hole in the neck below the pharynx), which is not without its own risks and complications, the surgical team performed a mandibular distraction where Steven's jaw was broken in two places and gradually lengthened with the help of titanium expanders inserted under the skin. This moved the tongue forward, and with Steven’s airway cleared, he was finally able to be discharged from the hospital.

Steven’s jaw brackets will be removed through another surgery in February and Paige and Matt are actively working with Steven and his therapy teams on oral feeds.

The above does not encompass the entire complexity of the hand Steven was dealt and Steven will require a very tailored education to help him make new connections and optimize his cognitive and functional capacity. As Steven grows up. We will learn more on what therapies and devices are best fit to support his unique needs. As of right now our Superhero will take on the following challenges:

Grade 4 Brain Bleed

-          Weekly Physical therapy

-          Weekly Speech therapy

-          Weekly Anat Baniel therapy

-          Unknown Complications related to cerebral palsy

-          Ventricular-Peritoneal (VP) shunt revisions due to infection or shunt failure

Hemifacial microsomia 

-          Hearing aids (On going)

-          Ear cosmetic repair

-          Lateral Cleft lip correction (24 months)

-          Second Mandibular Distraction (Age 6) to correct bite planes

-          Orthodontia
-          Hypospadias: 2-part surgery
-          Hernia repair
-          Misshapen Vertebrae: Spinal Fusion and Alignment surgeries

Fundraiser Updates

Posted on March 3, 2016

Posted on March 3, 2016

An update from Matt & Paige:

"Wow, we continue to be amazed by the wonderful friends and family we have!  
Steven is now just over 7 months old, and we have been out of the NICU for 50 days!  He continues to amaze and delight us daily - his quick smile and bright eyes are a constant source of joy.

We have a busy schedule of therapies, with traditional Physical Therapy as well as ABM to augment his neuro-muscular mapping.  The video shows him learning and discovering his arms and hands through this therapy, and figuring out how to move on his own.  We will soon begin Occupational Therapy (primarily grasping and dexterity, not job-related yet) & Speech Therapy (eating), as well as nutrition and developmental follow ups.

Speaking of nutrition - we've started spoon feeding a small amount of pureed foods, which he is very much enjoying!  With the various airway and jaw issues, Steven hasn't been able to do very well with a bottle, so looks like we may just skip that.  His favorite so far is probably sweet potatoes.

We're enjoying a nice couple of quiet months between surgeries, with good developmental time and minimal things causing him pain, so that has been wonderful.  

Looking ahead, we will hope to arrange a trip to Duke in the next 3 months for a treatment using Steven's cord blood stem cells.  There is an ongoing study indicating good results for kids with or at risk for cerebral palsy using a very minimally invasive autologous (own) cord blood transfusion.  The hope is that this can help repair some of the damaged pathways in critical areas of the brain, and coupled with intensive therapy, can minimize long term motor limitations.  So keep your fingers crossed!

Steven's curiosity and awareness let us know that his therapies will succeed, and we will make sure he gets to work as hard as he can to maximize his capability.  Your constant support and hope give us energy to tackle all challenges!"

Posted on February 11, 2016

Posted on February 11, 2016

"Steven has now been home for 4 weeks - and the NICU seems like a lifetime ago!

We are truly inspired by the number of people motivated by Steven's story - friends and family, near and far, new and old. It is equal parts daunting and comforting to know that Team Steven spans across across the globe and throughout all corners of our lives, and we thank you for your support in helping Steven reach his potential.
All of your ?encouragement, be it a text message, meals, a phone call, shared knowledge for therapies and intervention, or financial support remind us we are not alone in this fight to give Steven a great quality of life.  We love you and we hope you'll continue to be an active member of Team Steven.

We plan to keep you updated on Team Steven and Steven's progress and procedures on the website.  We would like nothing more than for you to share in our joy as he continues to grow and to develop into what we hope will be a happy little boy!

?While we remain on our toes, Baby Steven has been adjusting to home life better and better each day. ?He rewards us with lots of smiles and coos.  He has been doing the ?critical ?Anat Baniel Method therapy 3+ times per week to assist his brain in understanding his body. He also attends traditional physical therapy twice a week. We are pleased with his response to therapy, and like most of us he seems to have better days when he's had a workout.  While significantly delayed in his motor development right now, we're hoping that his level of interest, awareness, and engagement with his surroundings means that he can catch up with the right therapies. He's basically living the life of a fitness superstar right now - wake up, protein shake, workout, nap, another protein shake, another workout, and more naps and protein shakes to finish out the day. 

?To update you all on Steven's latest surgery, last week Steven had the titanium brackets in his jaw removed - this was the final step in his first jaw surgery, and was his fifth surgery thus far.  It was originally scheduled for this week, but a suspected infection and what looked to be a failure of one of the brackets made the surgeon want to accelerate the time frame.  Despite the shortened schedule, the jaw distraction proved to be successful (the apparent bracket issue was just failure of a minor part) which resulted in good bone growth and healing.  He has been home and breathing on his own since we left the NICU on January 12th?, so the airway obstruction appears to have been resolved.  Being home can be nerve-wracking,because we don't know how well he's breathing.

?It's ?been ?a constant source of worry, but knowing that the surgeons are confident this latest surgery has improved his airway helps us calm our nerves. We are eager to see Steven take the next step, which will be working to help Steven eat through his mouth.

We are looking forward to a couple of months free from post-surgical pain, and hope that this can be a good time for Steven to 
?be nurtured, and in turn learn, develop, and grow more. Our next procedure will be sometime in April.?

In the meantime, and from the bottom of our hearts, t?hank you for Believin' in Steven!?

Love, Matt & Paige"


Posted on February 1, 2016

Posted on February 1, 2016

A great & understandable question we've received a few times from Team Steven's members was, "Doesn't insurance pay for all or any of this?" In an ideal world, having really good insurance would mean these types of treatments would be fully paid for, or even partially for that matter. Unfortunately, high medical costs create high out of pocket responsibilities for his family. Also, some of the treatments baby Steven is undergoing (or will undergo) are not covered, but we know they are critical to give Baby Steven the best building blocks to fight the challenges he is faced with.

Best in class care isn't necessarily standard of care yet, which requires many treatment modalities to fall outside of his medical coverage benefits. We want Baby Steven to be able to not just dream to get to the base of the mountain, but to be able to still get to the top if that is what he wants to do! If it takes thinking outside the box and finding cutting-edge treatments that the insurance companies aren't paying for yet, then that's what we at Team Steven are determined to do, because we will always be Believin' in Steven!

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