Orange Socks.png

Stories

Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

We are actively collecting and updating new stories.

We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

Select a Category to View Stories

Most Recent Stories

Sasha and Gary: Down syndrome

Listen to Story

Sasha and Gary went to a prenatal Dr.’s appointment where an ultrasound showed enlarged ventricles in their baby’s brain, as well as holes in her heart. An amniocentesis revealed their daughter, Zoey, would be born with Trisomy 21-Down syndrome. Zoey is now 7 years old, and her life has inspired Sasha and Gary to adopt a little girl from China with Down syndrome.

...
Read More

Kristin and Chris: Full Trisomy 9

Listen to Story

At Kristin’s 20 week prenatal ultrasound Dr.’s found multiple abnormalities. Although Kristin and Chris were offered to terminate their son, Ethan, multiple times, they chose to continue the pregnancy. Ethan lived 93 minutes. The geneticists found he had full Trisomy 9, which is very rare. None of their Dr.’s had ever heard of a baby with Trisomy 9 being born alive.

...
Read More

Tori and Matt: Cerebral Palsy due to Cytomegalovirus or CMV

Listen to Story

Tori and Matt’s noticed their daughter was having some development issues when she was about nine months old and she hadn’t sat up or rolled over. Their Pediatrician referred them to a Pediatric Developmental Specialist. Through MRI testing, they found that Tori got Cytomegolavirus (CMV) while pregnant, which resulted in their daughter having Cerebral Palsy.

 

...
Read More

Tamara and Matthew: Currently pregnant with a fetal diagnosis of Down syndrome

Listen to Story Read Story

Tamara is 30 weeks pregnant with her first child. Tamara and Matthew were so excited to find out the gender of their child, so at 10 weeks they got a NIPT test done, which would tell them the gender, but also tested for genetic issues. Their Dr. called them with the NIPT results saying there was a 93% change their baby will have Down syndrome.

...
Read More

Gwen: Microcephaly, Asparagine synthetase deficiency or ASNS, Dwarfism, Cerebral Palsy, Epilepsy

Listen to Story Read Story

Through Gwen’s second pregnancy, all tests came back normal and she went full term with her little girl, Claire. After Claire arrived, she was diagnosed with Microcephaly, Dwarfism, Epilepsy, Cortical Visual Impairment, and Cerebral Palsy.

Gwen did not expect that to happen again, but when she was pregnant with her third child, she found out at 26 weeks that her baby Lola also had the same diagnosis. When Gwen was given the diagnosis for Lola, her doctor offered to terminate the pregnancy.However, Gwen chose to continue her pregnancy.

...
Read More

Sariah and David: CHARGE syndrome

Listen to Story Read Story

Sariah had a typical pregnancy with her son David. Less than 24 hours after he was born, he was in surgery to have his trachea esophageal fistula or TEF repaired, that the doctors noticed just hours after his birth. Within the first six weeks of his life, their son, Spencer had three major surgeries to repair his esophagus and trachea. It was not until Spencer was 11 years old, that he was diagnosed with CHARGE syndrome. This syndrome can cause different issues in different children, such as heart complications, cleft lips, growth issues, and more. For Spencer, it has caused him to be deaf, visually impaired, and have hypertonia, or poor muscle tone.

...
Read More

Nancy and Daniel: PPP2R5D

Listen to Story Read Story

Nancy and Daniel have a six year old little girl named Avianna. When Avianna was a few months old, Nancy and Daniel started noticing that she wasn’t reaching milestones that other babies of the same age were. They started Avianna in physical therapy and she was still not progressing, so they were urged to see a geneticist and neurologist. It took doctors almost three years to diagnose Avianna with a variation of what is known as PPP2R5D. This condition is so rare that there are only 28 known cases in the world.

Avianna has severe scoliosis, low muscle tone and speech issues, so she has multiple therapies to attend in and out of school. Nancy and Daniel say that Avianna is a fighter who is always smiling and if it weren’t for her, they would not have been able to advocate and raise awareness for such a rare condition.

...
Read More

Adrianne and Jason: Tetra-Amelia syndrome

Listen to Story Read Story

Adrianne and Jason had two biological daughters when they adopted their son and then their third daughter Maria from the Philippines. Maria has Tetra Amelia syndrome, a meaning she was born with the absence of all four limbs. Adrianne and Jason had no experience with special needs children, so they had to search and find resources, ask questions, and prepare to adopt Maria. Maria has been home with her new family for almost a year and a half. She has overcome many limitations and shown her family that, despite her disability, she can be happy and enjoy life like anyone else.

...
Read More

Katie and Nathan: Rhizomelic Chondrodysplasia Punctata, or RCDP

Listen to Story Read Story

Katie was 20 weeks pregnant when she and her husband went in for a routine ultrasound. When the technician measured Claire, she found that her arms were a little shorter than they should be. They had a follow up appointment scheduled for four weeks later, thinking everything would be normal. At 24 weeks they found out that Claire had a form of skeletal dysplasia, which they later found was Rhizomelic Chondrodysplasia Punctata or RCDP. This form of skeletal dysplasia is very rare and fatal. 

...
Read More

Connect With Us

Orange Socks

Orange Socks is an initiative of RISE, Inc.,
a 501(c)(3) organization.


Powered By Fasturtle