SOFT Trisomy 18 & 13

SOFT- The Internet’s most complete source for medical and family resources for Trisomy 18, 13 and Related Disorders #trisomyawareness

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

This Trisomy Awareness Month, we’re celebrating Every Family, Every Story—because every journey is unique, powerful, and worth sharing. 💙💛❤️

#TrisomyAwarenessMonth

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

📣 Huge news for the Trisomy 13 & 18 community! The AAP has released historic new care guidelines.This is a powerful step forward in #ChangingTheNarrative.

📰 Read the press release: https://t.co/NL9GDcYVOL

#Trisomy13 #Trisomy18 #SOFTFamilies #MedicalAdvocacy

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙Every #Trisomy journey is different & the challenges of surgeries, therapies & appointments can be overwhelming. That’s why it’s so important for parents to advocate strongly for their child & choose doctors who listen, care & are committed to helping.” 💙❤️💛

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Vanessa, a brave soul whose story is full of love & hope.

"Hola SOFT families, this is Vanessa & she just turned 21! We are so blessed to have her in our lives -she’s sassy, sweet & her(Thread🧵)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙every single day. I’ve found that some drs don’t really know about #Trisomy18, especially the mosaic form. When I meet a new dr, I introduce Vanessa & share her story. I appreciate doctors who acknowledge her & say, ‘Hello Vanessa,’ rather than those who ignore her. (cont)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth @TheACMG
https://t.co/CLKrTjjmX0

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙recibió el cuidado que necesitaba. Hoy, ella está en buen estado de salud. Nuestros niños sí son compatibles con la vida. Con amor, fe y acceso a una salud de calidad, todo es posible. Para mí, Olivia es un regalo maravilloso que Dios me mandó y cada día agradezco por ella."🌼

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Olivia, a brave little soul whose story is full of love & hope.

"Los médicos me decían que mi hija, Olivia, no sobreviviría y me sugerían abortar, incluso a los seis meses de embarazo. (Thread🧵)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙Pero yo decidí dejar todo en manos de Dios. Cuando nació, me dijeron que la llevara a casa para que falleciera, pero me negué. Luché intensamente por su derecho a recibir atención médica de calidad y gracias a Dios y a algunas autoridades que apoyaron mi esfuerzo, Olivia(cont)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Lua, a brave little soul whose story is full of love and hope. 💙❤️💛

"She is so very loved by everyone around her. Believe in magic!" ✨

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙& doctors are planning to remove his vent. The road has been rocky, but we’ve witnessed so many miracles. Our faith carried us through & seeing his progress continues to amaze and inspire us."💗

Share your child’s story for our Spotlight, visit https://t.co/Wx9qcpVeWM

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Joseph, a brave little soul whose story is full of love & hope.

"Every case of trisomy is different & all kids deserve a chance. Many families face discrimination & a lack of hope from (Thread🧵)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙doctors, but my son’s journey has proven how resilient these children can be. While we were told he wouldn’t survive or would face severe health issues, his only major challenge was breathing on his own -likely due to being born premature. Now, he no longer needs oxygen (cont)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

Understanding Cat Eye Syndrome🐈👁️

This rare genetic condition gets its name from a coloboma which can resemble a cat’s eye — though not everyone with CES has this characteristic. CES can also affect the heart, kidneys & digestive system. Every individual’s experience is unique

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

It’s #TrisomyAwarenessMonth!💙🦓

We’re shining a light on Trisomy 22, a rare chromosomal condition that occurs when there’s an extra copy of chromosome 22. Each journey with T22 is unique & so are the incredible individuals & families navigating it with strength & love. 💪💗

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙birth was overwhelming, but support from other families helped us navigate the journey. Our advice to new families is to cherish each day as a blessing from God. Melia’s life was our greatest joy & though she now rests in heaven, her light continues to shine in our hearts.”💞

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Melia, a brave little soul whose story is full of love & hope.

"Melia was the strongest fighter we’ve ever known, inspiring us every day to advocate alongside her & share the light she (Thread🧵)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙brought to our family. She loved music, watching Moana from her chair or swing & showed resilience even on her hardest days. Every child with a #trisomy diagnosis is unique & deserves individualized care to reach their own milestones. Learning of Melia’s diagnosis after (cont)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#WorldDownSyndromeDay!💙💛

We celebrate the incredible individuals with Trisomy 21 (Down Syndrome) We the joy, love & inspiration they bring to our lives. Every Family, Every Story, reminds us that every journey is unique. #TrisomyAwarenessMonth

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙off children due to a trisomy diagnosis. Our journey hasn’t been easy, but it has been filled with love, faith & the unwavering belief that every child deserves a chance."

Let’s celebrate these beautiful lives & raise awareness together. 💙❤️💛

#TrisomyAwarenessMonth

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

#TrisomyAwarenessMonth Spotlight:🌟

We’re highlighting the incredible journey of Leila Hope, a brave soul whose story is full of love & hope.

"Leila is truly a gift from God & has overcome so many obstacles, proving just how strong & resilient children with trisomy (Thread🧵)

[SOFT Trisomy 18 & 13 @Trisomy_SOFT]

💙and they are worth fighting for. They bring kindness, love & a perspective that changes lives for the better. However, too often, they are denied care based on outdated beliefs. I strongly advocate for Simon’s Law, ensuring doctors treat the symptoms rather than writing (cont)