Inspiring Stories of Thriving Children with Trisomy 18: Overcoming Challenges

Welcome to our **Thriving Thursday** page! Here, we celebrate the incredible stories of children living with Edwards Syndrome, also known as Trisomy 18, who are defying the odds and leading vibrant, fulfilling lives. Each week, we highlight a new inspiring warrior, showcasing their strength, resilience, and the joy they bring to the world. Our goal is to spread awareness and demonstrate that these amazing children are not only compatible with life, but thriving, proving that they can overcome challenges and make a meaningful impact. Join us every Thursday to meet our newest heroes and be inspired by their remarkable journeys!

If you want your child added, follow this link to our submission page! We can’t wait to see what adventures they have been experiencing!

https://edwardssyndrome.org/thriving-thursday-submissions/

February 2024

Maria Elena - Full Trisomy 18 - 6 years old

Meet Maria Elena – 6 years old – Full Trisomy 18.

In the words of her family,” We were told by the doctors that she would not be born alive or that she would die at birth. If she did survive then it would be for a year and she would be a vegetable and not recognize anyone around her. She plays with her siblings, sits for a few minutes by herself, and walks in her walker.” Look at Maria Elena cruising in her gait trainer!!! Keep up the amazing work!

Josiah - Mosaic Trisomy 18 - 9 years old

Meet Josiah!

This sweet 9-year-old radiates happiness and is THRIVING. The picture speaks for itself. Keep rocking it, Josiah! You are going to accomplish big things!

Rylee - Partial Mosaic Trisomy 18 - 18 years old

Meet Rylee!

She is 18 years old and has Partial, Mosaic Edwards’ Syndrome. In the words of her family, “Rylee drives independently, competes in the Miss America organization, and will be attending college next year in a double major dual degree program. She is earning a BA in Deaf Education, a BA in integrated STEM Education, and a Master’s in Education by the age of 23, with plans to earn her doctorate in Education by age 27. Rylee is a published author of a children’s book, “Choose Wise Words”, and is a three-season varsity athlete, graduating from a college preparatory academy this coming May, with 11 varsity letters.” In these videos she is reading her college acceptance letter and driving! What an inspiration Rylee is! Keep doing big things!!!

Eleanor - Mosaic Trisomy 18 - 3 years old

Meet Eleanor Jane!!

She is 3 years old and has Mosaic Edwards’ Syndrome.

In the words of her family, “Eleanor Jane ever since birth has been determined to do her own thing. She doesn’t know the word can’t and tries everything! She does three therapies a week and she loves them. She’s always so happy and ready for the day. She rules the house. We love traveling and exploring with her. She can do it all with us. She just went to Mexico and had a blast! Despite a diagnosis – She is compatible with living! She has shown that she is compatible with everything!”

Miley - Full Trisomy 18 - 4 years old

Meet beautiful Miley!

She is 4 years old and has Full Edwards Syndrome.

In the words of her family, “Miley joined our family through adoption at the age of 2.5 years old. She is past the window for safe repair of her VSD and is oxygen-dependent due to Pulmonary Hypertension. She continues to live her best life and prove her medical team wrong time and time again. We have an amazing PICU that knows her very well and supports our decisions for her 100%. Common viruses typically mean a week or two in the hospital. So far, she has shown resilience and perseverance by bouncing back even stronger each time. Miley participates in PT, OT, and Aquatic therapy as well as home-based preschool. She loves balloons, Disney Jr, and any toy that makes noise. She is very close to independent sitting and has started initiating steps in her gait trainer. Her best feature is her smile and giggle. She is so full of joy and loves to be silly with anyone who will join in. Although Miley is followed by hospice services, she is continuing to thrive and write her own story of life with T18 and CHD.”

What a rockstar!!! Miley is living a beautiful life and thriving!

January 2024

Natalia - Full Trisomy 18 - 22 months old

Meet Natalia!

Natalia has been doing amazing lately, she’s been off the vent almost all day except for when sleeping. She has been working extra hard in PT. She’s able to sit up by herself for a few minutes now. I think this is the best Natalia has been, we will continue to fight and push for more! She’s now over 20 lbs! Keep growing baby girl!

Laelynn - Full Trisomy 18 - 10 months old

Meet Laelynn! She is 10 months old and has Full Edwards’ Syndrome.

In the words of her Mom, “Lae is a feisty little miracle. She’s beaten every single odd that was placed in front of her. She spent 3 months in the PICU. They were waiting until she was bigger for cardiac surgery so they used a balloon to help temporarily. Come to find out, three months later she didn’t need the surgery anymore. She went home with no medical intervention needed. My husband and I always say “It’s the Lae Show” she’s the star! We advocate and fight for her while informing the doctors that these babies are compatible with life.”

She certainly is a star! Look at this beautiful baby!!!

Jemimia - Mosaic Trisomy 18 - 7 years old

Meet Jemima! She is 7 years old and has Mosaic Edwards’ Syndrome.

In the words of her family, “We praise God for the gift of Jemima’s life, and for all she has accomplished! First, she graduated from hospice, and now she has graduated from Kindergarten! Jemima is a miracle to our family and a delight to all who meet her!”

That all couldn’t be more true and we are honored to feature this warrior! Keep shining that light, sweet Jemima!

Landry - Full Trisomy 18 - 9 months old

Meet Landry! He is so handsome!

In the words of his family, “Landry has been beating the odds since birth when he had an 11-day NICU stay. He was diagnosed with Full T18 at 5 days old. He has yet to need any surgeries. He is currently in the 6th percentile on the typical growth chart and he loves to coo and smile at his 3 older siblings.”

What a warrior he is. Keep being a rockstar, Landry!!

December 2023

Aurelia Soleil - Partial Trisomy 18 - 2 years old

Aurelia Soleil is almost 2 and has Partial Trisomy 18!

In the words of her family, “Aurelia Soleil is our beautiful, sassy, Radiant sun! She spent her first 10 weeks in the CICU/NICU before coming home for the first time. Her first year was tough and we were in/out of the hospital for respiratory distress before almost losing her last year to Enterovirus. But, she pulled through in time to make it home for Thanksgiving! She battles with an unrepaired VSD and Pulmonary Hypertension, but has been pushing through past everyone’s expectations! Since then, she has been Thriving at home! She is my biggest hero, and she has filled us with so much joy!”

Aurelia Soleil you are so beautiful and a warrior!

Lia - Full Trisomy 18 - 14 Months old

Lia, a 14-month-old warrior with Full Edwards’ Syndrome!

In the words of her family, “Lia has shown big improvements at therapies. She works hard on vision and tracking things. She smiles a lot and responds with different sounds. She likes to play color games on the iPad. She loves music, walks, and her family. She has a special relationship with kids and she loves to smile and talk to them.”

This little girl just radiates joy and love!

Alistair - Partial Trisomy 18 - 7 years old

Alistair is 7 years old with Partial Trisomy 18. In the words of his family, “Alistair always tries his hardest and does his best! He is a rockstar! His favorites include his family and friends, movies and music, and being outside when the weather cooperates.”

We love watching Alistair thrive. He fights big battles, but is always thriving through them all. A true warrior that we hope brings inspiration to many. He sure does bring inspiration to the ESA.

November 2023

Ember - Mosaic Trisomy 18 - 6 years old

Ember is 6 and has Mosaic Edwards’ Syndrome.

In the words of her parents, “Ember went indoor skydiving for her 6th Birthday. The sky’s the limit for our girl! She loves to drive the boat with her grandpa too!”

We love watching sweet Ember thrive and do amazing things!

Gunnar - Full Trisomy 18 - 8 Years Old

Y’all meet Gunnar! He is a Trisomy 18/Klinefelters Syndrome stud from southeastern Kentucky in the hills of Appalachia. On December 1st, 2015, Gunnar was born in a hurry at 34 weeks, weighing only 2lbs 8oz. He spent several weeks in the NICU at the University of Kentucky hospital. He is also famously known as “Gunnar the Runner.” Although Gunnar cannot stand alone, he has the passion and heart for running just like all of his siblings, who also have or currently run Track and Cross Country. Gunnar loves to move! He has had too many operations & surgeries to list and sports a G-tube and dual Cochlear implants to enhance hearing all the world has to say. Gunnar is the first ever child on record with Edwards’ Syndrome to receive a cochlear implant. This child steals the hearts of many as he loves activities such as playing ball, riding the RZR through the mountains, listening to music (Kane Brown is his favorite!), swimming as well, and…wait… watching NASCAR on TV. With Gunnar about to be EIGHT, you can see why we need to celebrate him this Thriving Thursday!

October 2023

Faith - Mosaic Trisomy 18 - 4 years old

Meet Faith!

She is 4 years old and has Mosaic Edwards’ Syndrome.

In the words of her family, “Many medical professionals had little faith in our girl, constantly reminding me of the statistics, throughout my pregnancy and even after her birth. She wouldn’t make it off the ventilator, she did, she won’t survive her first cold, she did, she wouldn’t survive past her first birthday, she did and then some! At 18 months, she was diagnosed with Wilm’s Tumor, 4 months of Chemo, during the worst of COVID, and a septic infection during that time. She received her final chemo on her 2nd birthday. Faith has overcome the odds again and again. She is now almost 5 years old, loves to be loved, and is an absolute testimony of the power in prayer and our faith!”

You are amazing Faith. Keep breaking every barrier!

Maeve - Full Trisomy 18 - 6 months old

Meet Maeve!

Maeve has Full Trisomy 18. In the words of her family, “We are so proud of Maeve! She had heart surgery at 2 weeks old and spent 36 days in the NICU. She is now happily at home growing and working on becoming stronger! She does great with tummy time and loves her bottles! She is the most inspiring girl!”

She sure is an inspiration! We are honored to share her. Keep being amazing Maeve!

Fiona - Mosaic Trisomy 18 - 2 years old

Meet Fiona!

Fiona is two and a half and has Mosaic Edwards’ Syndrome. Fiona walks, talks, eats by mouth, breastfeeds, and thrives beyond her parents’ wildest dreams! Fiona was born at four pounds nine ounces and is now almost 22 pounds! She moves at her own pace and is taking the world by storm. Check out her TikTok page to see updates and learn more about her progress.

@fionamosaictrisomy18

Maebry - Partial Trisomy 18 - 4 years old

Meet Maebry! 🩵

Maebry is 4 years old and has Partial Trisomy 18. Her family says, “Maebry has been improving in so many areas of her life lately. She has been making strides with her vision, eating, and using her arms. Her biggest accomplishment this year has been her head control, which in turn, has helped her to be able to stand! We are so proud of all that she has accomplished and all that she will do!”

Keep breaking those barriers, sweet girl!

September 2023

Gia - Partial Trisomy 18- 7 years old

Meet Gia!

Gia has Partial Trisomy 18. She will be 7 in November and is from Peru!

Her family says, “She does Physical, Sensory and orofacial therapy since she was 6 months old. The doctors in her country said she would not live for more than a year and that she was incompatible with life. She is here to tell us this is not true. She had hepatoblastoma when she was 18 months and she had liver surgery. She is doing great! She is a happy girl!”

What a superstar! 🩵🩵

Paislee Grace - Mosaic Trisomy 18 - 1 year old

Meet beautiful Paislee Grace.

She is one year old and has Mosaic Edwards’ Syndrome.

In the words of her family, “Paislee Grace wants to show the world that she is compatible with life and that she is thriving so well. She has overcome many obstacles and continues proving she is a warrior.”

We are cheering you on, Paislee!

Felicity - Full Trisomy 18 - 7 years old

Meet Felicity, She is 7 years old and has Full Edwards’ Syndrome.

In the words of her family, “Felicity is a sweet little warrior princess who has defied so many challenges. She has gone from a wheelchair with full body supports, 100% tube fed, on O2 and monitors, and more; to walking/running/playing, eating completely by mouth, and only monitors when sleeping and sick. She has had many surgeries, therapies, and lots of prayer and love. The road has been very hard at times but worth every moment.”

Look at this Basketball star go!!!

Faith Ann - Full Trisomy 18 - 7 months old

Meet 6-month-old, Faith Ann!

Faith’s family says, “She’s the little mustard seed that has moved mountains in many hearts, especially ours! She has shown us more and more who she is and what she is capable of every day!

Faith was born at 3 lbs 9 oz and is now close to 8 lbs! She continues to progress in her breathing! We take short strolls with no O2 support and rock it! She can hold her head up, tries to talk back, uses her hands, and is full of smiles. Her opinion is known because she isn’t afraid to voice her opinion, especially if she is hungry! She can bottle feed (not the full amount) whatever she decides she takes, we celebrate! She was born with a few mild heart defects, she is reaching for the stars! Furthermore, she loves her siblings and is a cuddler! We are so very blessed to be able to share her with you all!”

We love watching Faith live her best life!

August 2023

Ella - Full Trisomy 18 - 3 years old

Meet Ella!

She is 3 years old and has full Edwards’ Syndrome. In the words of her family. “Ella is beyond belief, despite her T18 diagnosis the only ongoing treatment she has is for being tube fed and for slow growth, other than that she is medically perfect. She is smashing so many milestones we were told she would never do, she’s the happiest little girl we know!”

Charlotte - Full Trisomy 18 - 5 years old

Meet Charlotte!

Charlotte is 5 years old and has full Trisomy 18. Her family says, “Charlotte is a sassy, yet sweet, warrior. After birth, she began her journey at home on hospice with no interventions but after a month old required hospitalizations and some tools to help her thrive. She then transitioned to home nursing and Early intervention. With the help of both of those, her specialists, and many tools, she was able to graduate Pre-school and will start Kindergarten this fall! She loves many things but her favorites include Bluey, music, being outside, and her grandpa. Charlotte continues to smile each and every day and show everyone just what a fiery warrior she is!”

She is absolutely beautiful! Go Charlotte Go!

Emma Grace - Mosaic Trisomy 18 - 5 years old

Meet Emma Grace

Emma Grace just had her 5th birthday this week! She was born with Mosaic Trisomy 18.. her mother was told she wouldn’t live past 6 months old at the maximum. At the age of 5, she loves riding horses, swimming, and learning new things. Emma participated in her first therapy intensive in June with PT, OT, and Speech. Since the intensive, she sits up, gets into short kneeling and crawl position all on her own. She is becoming more mobile and is working on taking off into crawling. This year, she will be in Pre-K and showing she is compatible with school!

GO EMMA!

Mila - Mosaic Trisomy 18 - 6 years old

Look at our Thriving Thursday Kiddo!!!

It’s Mila!!!

IT IS THRIVING THURSDAY!!!

Meet Mila! She is 6 years old and has mosaic Trisomy 18. She is known as Mila the Miracle! Her mama says, “We were told she wouldn’t make it to birth, let alone 6 years! She is now 6 years old and thriving!! She is the strongest person I know! My little warrior princess!”

Look at sweet Mila, she is such a beautiful girl that is truly living her best life!

July 2023

Mia - Full Trisomy 18 - 4 years old

Meet Mia!!!

Check out Mia using her eye gaze. She heard her daddy come through the door and knew he was home from work. Just like any typical kid! She immediately started to greet him and ask him how he is on her eye gaze device.

It is amazing what those with Edwards’ Syndrome can do when given the tools to be able to do it!

Mia will be 4 years old on Monday and the vocabulary she can use on her eye gaze is quite impressive!

The ESA will definitely be sharing more about augmentative and alternative communication (AAC) devices!

Olivia - Full Trisomy 18 - 2 years old

Meet Olivia!
Olivia is a beautiful, thriving 2 year old with Trisomy 18!
“She has overcame so much in those two years. When we were pregnant the first doctor told us that she would never make it. Here she is, two and thriving. She’s a joy to be around and just such a sweet girl.” – Olivia’s mama, Brooke

Did you know Olivia’s mama wrote a book for kiddos in the NICU and it can be bought here! Although you’re little https://a.co/d/bndl4mt

Her mom also started a nonprofit called Olivia’s Odyssey that is doing wonderful things for the community. Give them a follow.

Sajjona - Full Trisomy 18 - 6 years old

Yay!! It’s time for #ThrivingThursday!

Meet Sajjona!

Sajjona’s mama says, “Sajjona was given 2 weeks to live “if we were lucky.” We were told to have an abortion due to no hope! Yet, here we are–five years & eight months later with our daughter. She does say words & can laugh, cry, smile–all things they said she would never do. She is living a full life where she attends Sunday School, 4H Club, Homeschool club, and has many friends. She blesses her family on a daily basis.”

Check out this amazing girl learning to walk!

Brooklyn - Full Trisomy 18 - 2 years old

Meet Brooklyn!

It’s #thrivingthursday and we are so excited!

Brooklyn has Full Edwards’ Syndrome (Trisomy 18) and is 2 years old. This picture shows she is thriving! She is sitting indepentely in the grocery cart! Se is compatible with sitting and grocery shopping! She is showing off all of her hard work of hitting those milestones!

June 2023

Javier - Full Trisomy 18 - 2 years old

Meet Javier!

It’s #thrivingthursday and we are so excited! Javier has Full Edwards’ Syndrome (Trisomy 18) and is 2 years old. This picture shows him thriving using his gait trainer! He is compatible with standing and walking! He works very hard with his therapist to hit those milestones!

Alejandro - Mosaic Trisomy 18 - 2 years old

Meet Alejandro!

Our first #thrivingthursday and we are so excited!

Alejandro has Mosaic Edwards’ Syndrome (Trisomy 18) and this video had us all gushing. You’re going to need sound on for this and watch until the end!

We would love to feature your warrior on here!