Race for Every Child 2023

Evie's Squad

#squadgoals #EvieRose #zipperclub #WSawareness #raceforeverychild2023

IT'S THAT TIME OF YEAR AGAIN... RACE FOR EVERY CHILD 2023, I'm calling on Evie's Squad to help pay it forward by supporting the wonderful work of Children's National.

~~THIS YEAR- 2023~~

Evelyn has grown into a vivacious 5 year old with a sprawling vocabulary and unparalleled empathetic nature.  She’s so excited to start kindergarten this year, in addition to welcoming another brother to dote on this fall. 

We received wonderfully shocking cardiology news early this year: Evelyn surprised everyone with glowing improvement to her aortic gradients at her most recent echo.  The changes mean we are now down to a once a year monitoring track and, God willing, another intervention is no longer imminent!

Evelyn is an active little lady— learning to swim, “shaking her booty” at tap and ballet and playing soccer.  She’s anxious to learn to play guitar.  She’s learning to read, improving her writing skills and her imagination is soaring everyday.  We’re so excited to watch her grow and thrive this year.  We couldn’t be more proud!


Evelyn Rose has been bringing joy to our lives for 7 months now… and a busy 7 months it’s been. You would never know by the smile on her face and the light in her eyes, but the scar on her chest tells the deeper story of the fight she’s fought since the day she was born and the incredible care team that has been by our side through it all.
Following a traumatic breathing episode shortly after birth on January 24, 2018, we would find out our new baby girl had congenital heart disease. Most notably, pulmonary valve stenosis - a tightening of the pulmonary artery and tethering of one of the valve leaves. Over the coming weeks and multiple specialty appointments at Children's National Medical Center (CNMC), we came to learn more about her heart condition, as well as its common association with genetic conditions. Tests conducted diagnosed Evelyn with Williams Syndrome, a genetic condition caused by a spontaneous deletion of part of the number seven chromosome. The variation of the elastin gene, which allows vessels to grow and stretch as well as the function of connective tissue, puts blood vessels to all major arteries at risk for stenosis; thus the high number of cases of heart disease. While children with Williams Syndrome tend to be social, friendly, and endearing, have an affinity for music and smiles that light up a room, they also may experience mild to moderate developmental delays. Williams Syndrome affects 1 in 10,000 people worldwide.
At her 3 week cardiology appointment with Dr. Andrea Beaton, the cardiologist who met with us the night of her birth, Evelyn's stenosis was upgraded to severe and surgery was ordered. Atop the risks of heart surgery, Williams Syndrome causes higher risk with anesthesia, which compounded the situation and flood of emotions we were feeling for our precious, seemingly delicate little girl. As God would have it, CNMC brought us Evelyn's cardiac anesthesiologist, Dr. Andrew Matisoff, a national expert on the topic of anesthesia in Williams Syndrome patients. In preparation for surgery, Evelyn was admitted to CNMC on February 19, 2018 for a CT scan to determine if any other arterial issues existed that may need intervention, such as coronary abnormalities. The scan revealed no other major abnormalities; however, our hearts broke when we were told Evelyn stopped breathing during extubation. At the hands of the skilled doctors, she was emergency reintubated, stabilized and admitted to the Cardiac Intensive Care Unit (C-ICU).
The decision was made to keep Evelyn intubated and push up the surgery to February 22, 2018. She remained admitted to the C-ICU in the interim. The care team was as much there for us as they were for her, comforting us during this scary, unknown time where all we could do was trust the incredible doctors and nurses and leave it up to God.
On February 22, Evelyn underwent open heart surgery to repair the pulmonary stenosis. Dad donated blood for her surgery, knowing she would need it. We were so blessed to have her in the hands of an incredible surgeon, Dr. Pravana Sinha, who walked us through every step of the procedure, answered every question we posed and told us there was no alternative- she needed this surgery. We knew he and God were going to take care of our sweet girl. Still, we sat with bated breath in constant prayer during the approximately 4-hour procedure, during which her heart was placed on bypass, an incision was made in the pulmonary artery and a patch was placed to widen the tightened area. The surgery was a success and Evelyn was readmitted to the C-ICU for recovery. The next 24 hours were the most scary, vulnerable moments and I pray to God we won’t have to experience it again. We watched all night as the nurse devoted every second to her care, carefully managing the ups and downs of her blood pressure, pain, and fluid retention. She was so vulnerable, and we had surrendered her to God and their care. Evelyn proved how far from “delicate” she is. She is the most resilient person I know. She thrived in recovery and, if not for the ancillary tests and findings that followed, we would have been home 3 days post-open-heart surgery.
Weeks later, at our second post-surgery follow up appointment, the echocardiogram showed more concerning information. Evelyn’s aortic stenosis, which was very mild at the time of surgery, was now reading moderate. Additionally, secondary tightening of the pulmonary branches was occurring due to the formation of scar tissue. The surgical site, however, looked wonderful. A catheter procedure, during which they access the heart through the groin and neck, was performed. They successfully ballooned the pulmonary branch, breaking the scar tissue and improving flow. They diagnostically looked at the aorta for the full picture of the aorta’s structure and accurate pressure gradients, which are critical as we continue to monitor its performance.
Evelyn’s aortic stenosis is being closely monitored. She has had two follow ups since the catheterization procedure, both showing no change, which is great! However, she may still need surgery should things worsen. We pray that as she continues to grow, the artery will grow alongside her and not further restrict blood flow.
We know we haven’t seen the last of Cardiology and they will forever remain a critical part of Evelyn’s care team. In particular, Dr. Andrea Beaton and Dr. Craig Sable, who have been with us since the night of her birth, have been our clinical and emotional rocks through it all.
In addition to the amazing care we received through CNMC Cardiology, we’ve unfortunately been seen by many other specialties at CNMC. On the morning of February 25, Evelyn underwent a brain and spine MRI, originally ordered by the geneticist but also useful in baselining of heart surgery patients. This MRI uncovered a cyst in her throat, micro hemorrhaging in her brain and an elongated spinal cord. Additionally, the care team noticed that her foot was cold, ordered an ultrasound and uncovered a very large clot in her left leg where an arterial intravenous line was located. Evelyn was placed on injected medication for the clot but required a direct laryngoscopy and bronchoscopy procedure in the Operating Room to scope and ultimately remove the cyst. This procedure was performed on March 2, requiring Evelyn to remain in the Heart and Kidney Unit (HKU) for the week, but was ultimately successful in removing the fluid-filled cyst at the base of her tongue.
We are so grateful to be in Washington, DC and have access to the expert, professional and all-around wonderful people that make up Children’s National Medical Center. Through it all, we have seen an immeasurable amount of compassion and patient-centered, parent involved care. We recognize how truly blessed we are to have the care team of CNMC as part of our family on Evelyn’s incredible medical journey.

The last year has been packed with incredible growth and development for Evelyn. She continues to be followed by multiple disciplines at CNMC but especially Cardiology. They are monitoring the gradient (pressure variation) at her aortic valve, which is pinched like an hourglass (stenosis). Should the gradient get too high, she would need another open-heart surgery. HOWEVER, we have been incredibly blessed! Tom and I have held our girl with bated breath every 3-4 months while an echocardiogram is performed. Though we hope the gradients improve over time, Evelyn has at least remained stable, the gradients unchanged, for nearly a year. We thought we would have had a second surgery by now.
Instead, she has been thriving! She is FULL of personality. Her smile lights up a room more than ever. Her joy is truly undeniable. The milestones have come, all in her own time! She started crawling in February (13 months) and walking last month (19 months). She's almost running now! She LOVES talking, singing, and dancing. She's got moves you'd envy! She is so smart, and we are so proud of our girl!
This road hasn't been easy... and it will continue presenting us challenges many are blessed enough to never know. BUT... I wouldn't change one thing about this journey. I want what every mother wants-- for their child to thrive and be accepted in this world. I know she will move mountains. She was purposefully and perfectly made.


In the last year, Evelyn has learned to run and jump, talk in full sentences, identify letters & shapes, count in four languages, sing songs, have an opinion and so much more. She's even shining in her newest role as proud big sister to brother, Leo. She is thriving! You would never guess what she's been through... She continues to be monitored every 4-6 months with echocardiograms. They are monitoring the gradient (pressure variation) at her aortic valve, which is pinched like an hourglass (stenosis). Should the gradient get too high, she would need another open-heart surgery. HOWEVER, we continue to be incredibly blessed! Though it has not improved on its own, it has remained stable, meaning no intervention for now. As she grows and the demands of her heart increase, this may change, but for now, we take in every precious moment, sweet smile, bouncing curl and all of her incredible achievements.
This road hasn't been easy... and it will continue presenting us challenges many are blessed enough to never know. BUT... I wouldn't change one thing about this journey. I want what every mother wants-- for their child to thrive and be accepted in this world. I know she will move mountains. She was purposefully and perfectly made.

Despite the challenges of COVID, Evelyn has continued to thrive over the last year. She is a doting sister, a loving friend, a passionate daughter, and an all-around empathetic person. She has learned so much this year, shattering goals we've set for her. As life begins to normalize again, we're so excited for her to get the socialization she craves and needs. Evelyn has begun preschool and is so excited to be in that environment. We are so grateful to have been cleared by both neurosurgery (monitoring for potential tethered spinal cord) and Ear, Nose, Throat (monitoring for the need for tubes). She had a clean Nephrology check up (monitoring for thyroid function, kidney function & calcium levels, all challenges folks with WS might have). And lastly, we're so grateful to report her heart has remained stable, if not slightly improved. Though we haven’t written off the need for another open heart surgery in the future, every year that passes where she can get stronger, we're grateful. Evelyn is growing and thriving... and we love getting to share her with you each year as we raise money in gratitude for the care we receive from Children’s National Medical Center.


Evelyn is the person I want to grow up to be! She is full of life, inquisitive, empathetic, strong-willing, and always sees the best in people. She and Leo (2 years old) have become the best of buds. They look out for each other, test each other, make each other laugh… all the things you expect between siblings.

Evelyn thrived last year in a fully integrated preschool classroom, receiving her therapies alongside the other students, both typical and neurodivergent, in the classroom setting. Evie receives speech therapy to work on her social interactions with peers and play skills, physical therapy to work on her strength and dynamic movements, and occupational therapy to hone in on the fine motor skills that will be so critical in her early learning career. She continues to surpass all expectation!

Evelyn’s last cardiology check up was just after her 4th birthday in February. Her aortic valve stenosis gradients continue to remain stable, with her heart showing no signs of strain (muscle thickening) and her blood pressures are great. Her previous repairs sites still look fabulous! We couldn’t ask for more. We will continue to monitor her heart 2x a year with echocardiograms, but the hope is she is past the critical growth period of infancy and toddlerhood and we’re safe from needing another open heart surgery until at least adolescence, God willing.
Evelyn is participating in gymnastics, organized running events, swim, ballet and much more. She’s enjoyed our trips to amusement parks, local farms, the beach and the pool. After a fun summer home with lots of little adventures, she’s excited to return to the classroom with a new teacher and the same sweet classmates.
As Evelyn is getting older, we’re talking more with her about her past—her scar, her surgeries and why she had them, the incredible doctors God brought into our lives to give her the health she has today, and Williams Syndrome—a part of her and something that, without it, she wouldn’t be the incredible girl she is today.

Thank you for your continued support, Evie's Squad!

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