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MEET DUKE BIRTWISTLE

aka "The Duke of Clubs"

We would love to introduce the youngest Operation 36 golfer to get a Hole-in-One. Meet Duke! Duke's first miracle wasn't a hole-in-one...

See, when he was just three weeks old, his parents were told that he had Hydrocephalus.

Scroll on to read the incredible story of Duke and learn how you can help support people living with this life-long condition.

Youngest Golfer to Get a Hole in One in the Operation 36 program!

Support Hydrocephalus

Thank you for learning about Hydrocephalus, about Duke, and for buying a hat to make a difference to benefit people who suffer from this life-long condition!
BUY THE HAT
“Duke’s journey began as a miracle conception and has been nothing short of a miracle ever since!”
Duke was born at 27 weeks premature weighing a mere 2 pounds.
At one week old on a routine brain scan, the doctors called Emily and Kipp: his parents, to tell them they found something statistically and clinically shocking, that Duke had a grade 4 IVH (intraventricular hemorrhage), aka a brain bleed. 

This meant he had suffered a stroke at some point in utero, during birth, or in that first week of his life; but they didn’t know when or why since he showed no signs ever of a trauma that would’ve caused this. Grade 4 is the most severe classification of a brain bleed that someone can have and means the active bleeding has extended into the brain tissue itself. This also means the short and long term medical implications are extreme. 

At 2 weeks old, a second brain bleed was found on the other side of Duke’s brain. This one was a grade 2, this is considered less severe and typically doesn’t leave much residual complications, but compounded with the original, it presents more problems. Also, again like the first it occurred without any explanation or instance to point to as to why. 

In the third week of his life, his parents were told that Duke had Hydrocephalus. 

Hydrocephalus is a build up of cerebrospinal fluid (CSF) in the ventricles of the brain because of a blockage of some kind. In Duke’s case that blockage was the clots of his brain bleeds not allowing the fluid to flow back through its typical return pathways into the body. This fluid buildup causes extreme amounts of pressure on the growing brain matter and his parents were told it would be a waiting game to determine when his first brain surgery would be to have a shunt surgically placed in his brain to allow that fluid to be drained. 

This shunt surgery would be needed to keep him alive. However, shunts hold the single highest failure rate of any medically implanted device- at a rate of 50% failure within 2 years, requiring constant revision surgeries. Although it would save his life, it could also dramatically decrease his quality of life, as most children with Hydrocephalus have more brain surgeries than they have birthdays.
This was truly terrifying.
His parents were told that because of his bilateral bleeds and his Hydrocephalus, Duke would likely never walk without assistance as he would have severe Cerebral Palsy by age 2. Further, he would likely have Epilepsy, he would have massive speech delays if he ever talked, and that he would have extreme behavioral challenges and learning disabilities as we approached school age. 

They came to learn from his doctors that he would always be “fragile” and to expect the worst.

Duke underwent daily head measurements and weekly ultrasound scans of his brain to assess the Hydrocephalus development and the fluid in his brain, as well as the progress of both of his brain bleeds. Amazingly, week after week Emily and Kipp were told that although Duke’s Hydrocephalus was worsening and his bleeds weren’t healing, he would not be being transferred for brain surgery. 

He was functionally doing “perfect” for his gestational age in the NICU. He showed no decline in his breathing, his digestion, his heart function, his lab reports, etc. He appeared by all accounts to be “healthy”, even though he should not be because of his conditions. For these reasons, his doctors allowed his brain to continue working on redirecting its neural pathways around the damaged areas of his brain and let him grow and flourish in the way neuroplasticity is designed to do at this extremely young age. Duke’s doctors and nurses were always cautious and observant knowing if he showed any bit of decline out of the usual that he would need that emergency brain surgery, but their optimism and hope for him allowed him to thrive and bloom as he tenaciously fought against all the obstacles in his way. 

He eventually graduated from the NICU before his due date, and was able to return home. Duke was monitored frequently by a neurosurgeon and with routine brain MRIs to continue to assess his Hydrocephalus and brain bleeds. 

He had decreased white matter of his brain caused by the pressure from the Hydrocephalus limiting his brain growth at such a critical stage, yet he grew all the neurons he needed in the brain matter he did have. He had an extremely underdeveloped corpus callosum, the area of the brain that connects your two hemispheres, and massive degeneration of the nerves in that area, yet again he showed no symptoms of Cerebral Palsy or any motor dysfunction outside of his typical prematurity age delays. 

Duke was seen for years by every therapist under the sun (!), and surprised every single doctor, nurse, and therapist that he encountered after they read his medical history then saw him in person. They couldn’t believe their eyes. He is a true miracle! No one had ever seen a kid like him, with a past like his, who was doing the things he was doing. He displayed not a single sign of any of the diagnoses the doctors said he was bound to have by age 2.

As he grew into a toddler and began to graduate therapies, it was obvious that he loved to move!
Music was a huge motivator for him, plus anything that got him fully physically engaged with both sides of his body was great fun for him. He loved to play the drums, but boy were they loud! 

So, he got a plastic set of golf clubs the summer he was 2 years old because he loved to watch the “golf boys” at his grandparents’ golf club and his parents needed a quieter hobby for him. Lo and behold, he never once missed the ball with every swing of those plastic clubs! 

By the time he turned 2 and a half in the fall, Emily and Kipp realized how much he was becoming completely obsessed with the game of golf and how much his motor skills were growing leaps and bounds the more he played it. Emily scoured the internet to find a set of tiny metal golf clubs made for children under 2 and found 1 set. 
Also, Duke plays golf left-handed, which is an additional challenge when looking for clubs for a toddler, but a huge bonus when it comes to his brain and his body, as he loves to defy odds!  His left side “should” be his paralyzed side since his grade 4 brain bleed was on the right half of his brain. So again, on the trend of encouraging as much neural development to keep that right side of his brain healthy and strong and continuing to grow by using the left side of his body, his parents never tried to push him to golf right-handed, even though so many outsiders suggested they do so. 

Duke’s passion for golf has never wavered since the day he got that first set of clubs. His face immediately lit up! Since his parents had to isolate most of his life and be careful of any head injuries, golf was the most perfect sport for him. Plus, it gives his parents a chance to actively engage with him doing what he loves because Emily and Kipp can play alongside him, which they have also very much come to enjoy golfing now. 

The family takes an annual vacation for Duke’s birthday to golf on the Carolina coast, by Duke’s request. Golf has been the ideal thing to do together as a family and something they can all continue to do and grow in together through the years and decades ahead. 

After posting so many videos to Emily’s social media of Duke’s amazing golf swing and blowing people’s minds, she was pushed to start his own branded social media. He now has his own instagram under @TheDukeOfClubs and even has his own brand logo that he has a custom golf ball stamp of too. 
When he began taking lessons with a coach who had been keeping his eye on him at our local range, knowing he was a very special and talented golfer, he joined the Operation 36 program. Duke loved knowing that his mom was tracking all of his practice times in the app and getting to watch the week’s lesson videos before going to class. 

Duke dropped his score by 5 strokes between his first two tournaments, which was a huge improvement. He really got the hang of the yardages and how to adjust his swing and choose the right club when starting at the 25 yards by that second tournament. As he progresses in Operation 36, his confidence has grown dramatically and he’s always so proud of himself to report back after class what the word of the week was that he learned about. “We did Green Reading today Mama! Now I have Posture, Power, and Green Reading this month!” 
He adores having his parents and grandparents come to his Op36 tournaments to watch him and his ability to focus and zone in, is so outstanding. He is really so in tune when he’s on the green, and he’s also just so incredibly happy! You’ve never seen a kiddo smile like Duke does when he’s out playing golf. His parents are so grateful for what golf has given Duke Calloway. Yes, his middle name ironically is actually Calloway! Tiger also got inducted into the Hall of Fame on Duke’s 3rd birthday while he was out playing his first real round of golf on his vacation, when previously he had only ever hit at a range. The synchronicities are not lost on them by any means. Fate really always had a hand in leading Duke into golf. 

Whenever his parents show Duke’s doctors videos of him golfing from his @TheDukeOfClubs instagram account, they just are in shock. This miracle kid they have all watched bloom since the beginning with little to no hope for a “typical” future, has really transformed into a well-adjusted and physically capable young child with no deficits. 
Youngest Golfer to Get a Hole in One!
Duke’s Miracle Journey does not stop there. We recently learned that Duke also has the great distinction of being the very youngest golfer to receive a Hole In One! With a golf club in his hands, there is nothing he can’t do!

His neurosurgeon and neuropsychologist attribute so much of his abilities to his love for golf and his parent’s support of that passion. The benefits golf has on the brain and in communicating the two sides of the body alongside furthering hand/eye coordination and muscle development and so much more is almost beyond comprehension and just has to be seen to be believed, like in Duke’s case. Golf quite literally grew his brain to a point it would have never gotten to without the sport. 

Luckily, Duke’s Hydrocephalus has not required any medical or surgical intervention, which is absolutely not the case for almost any other child diagnosed with Hydrocephalus. He is a less than 0.25% rarity, possibly even much less than that. 

As of now, Emily has never met another family with a child who has not required any surgery in almost 4 years of being active in the brain bleed and Hydrocephalus communities online and mentoring other new moms. Duke is why Emily volunteers to lead the DFW chapter of WALK To End Hydrocephalus, an annual fundraising community event for the national nonprofit and leading research organization: Hydrocephalus Association (HA). We want a cure that does not involve brain surgery and we want options to prevent Hydrocephalus from occurring in instances like Duke’s where it’s so common with circumstances like brain bleeds due to prematurity.

We are so appreciative of Operation 36 for their golf program and their amazing coaches, but mainly right now for stepping in to help us raise critical funds for Hydrocephalus research by collaborating with us to make these one of a kind “The Duke Of Clubs x Op 36” hats where all proceeds are directly going to the Hydrocephalus Association via Team Duke. 

Thank You

Thank you for learning about Hydrocephalus, about Duke, and for buying a hat to make a difference to benefit people who suffer from this life-long condition!
BUY THE HAT
Ryan Dailey, Co-Founder of Op36

Other ways you can help.

Donate here to Team Duke → CLICK HERE

Buy a Team Duke t-shirt → CLICK HERE

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