Featured Cherub: Nathaniel Cummings
Featured cherub of the week is Nathaniel Cummings. Nathaniel Cummings is the son of Chris and Jessica Cummings. Jessica is the Hospital Angel for Pittsburgh, Pennsylvania. Here is Nathaniel’s CDH story written by Jessica:
Nathaniel was diagnosed with CDH in 2011 at his 18 week ultrasound because his stomach was next to his heart.After researching CDH on their own, Jessica and Chris found CHERUBS. They were the only CDH charity to return emails/ chats/ calls/ etc. Jessica and Chris traveled to both Brown University and UCSF for fetal tracheal occlusion surgery. Jessica and Nathaniel were accepted at both hospitals and chose Brown University in Providence Rhode Island.
Featured Volunteer: Darlene Silverman
Darlene has been a member of CHERUBS since 1998 and has served as an Executive Board Member, Secretary and a member of several committees over the years. She is currently on the CDH International Parent Advisory Board and is the Research Committee Leader.
Darlene has an Associate’s Degree from Montgomery College in Maryland. Prior to her retirement, she worked as a Legal Assistant/Secretary at numerous law firms whose primary practice was Hospital Healthcare law and medical malpractice defense. She is the mom to 5 grown children and has 13 grandchildren (first grandchild, Emily, was born in 1998 with LCDH).
Featured Cherub: Wilder Alcoke
Featured Cherub of the week is Wilder Alcoke. Wilder is the daughter of our Montana State Representative, Mandy Alcoke. Here is Wilder’s journey, written by Mandy:
Our daughter Wilder was born on April 7th, 2017. I was 41-weeks to the day and in active labor. Wilder decided that she wanted to flip that morning and was breach. The doctor and midwife tried to flip her to get her out of the breech position. After two failed attempts my husband and I decided it was safer for the baby and myself to have a cesarean. Within the next few hours our lives would be devastated with words we had never heard before.
Featured Medical Professional: Ashley Gilles, Dietitian
We want to thank Dietitian, Ashley Gilles, at Le Bonheur Children’s Hospital in Memphis, TN for Bringing Hope Around the World to our members.
Written by Emily Taylor, mom to cherub Rowan, “We want to thank our dietitian, Ashley Gilles, for all of her support during our hospital stays. She was much more to us than just a dietitian - she became part of our family.”
More about Le Bonheur Children’s hospital from their website:
5th Annual 2018 Northeast Mustang Meet in Memory of Skylar M. Fonseca
On Sunday, August 12, 2018, the 5th Annual Northeast Mustang Show and All Ford Show took place on Staten Island in memory of Skylar Milagros Fonseca. They raised $3,500 for CHERUBS/CDH International.
Skylar's grandparents had this to say about their event and fundraiser, "On Sunday, August 12th, we proudly hosted our 5th annual Northeast Mustang Meet and All Ford Show on Staten Island, in memory of our Granddaughter Skylar Milagros Fonseca and all of the other angels we have lost to CDH. This event is made up of multiple car clubs and individuals as well, who come together to showcase their love and passion for their cars while at the same time, donate to a great cause. With each admission paid or raffle ticket purchased, proceeds are sent to Cherubs with the intention on being able to help other families who may be going through the same issue we did back in 2013. During our difficult time, Cherubs was there not only for our expecting daughter Brianna and Skylar; but for our family as a whole. This event is our way of giving back the comfort, compassion and understanding for other families living through CDH.
CDH Picnic in Peoria, IL, held on 9.16.18
On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL. Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven.
3rd Annual Get Your Shine On Golf Tournament Fundraiser
The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018. The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD. Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development.
Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected. This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend. They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio.
Featured Cherub: Taylor Jarecki Steffensmeier
Featured cherub of the week is Taylor Jarecki Steffensmeier. This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families. She continues to raise CDH Awareness and is an inspiration to so many of our members. Here is Taylor’s story in her own words:
I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair. One month later I broke out of the NICU and got to go home!
Featured Volunteer: Nicolle Colvin
Featured volunteer of the week is Nicolle Colvin. Nicolle Colvin is a CDH International Parent Advisory Board Member, Colorado State Representative, and Fundraising Committee Leader.
Nicolle is the mom of Kasey Colvin, 11.16.08-12.19.08. Kasey was born with an undiagnosed left sided diaphragmatic hernia. Kasey fought for 33 days, he had severe chylothorax and his lymphatic system wasn’t functioning properly, so he grew his wings on December 19th.