Inspiring Life Despite A Diagnosis

Immediately following his daughter's birth, the doctor told them she suspected their baby girl had Down syndrome.

After Lucas missed milestones around nine months old, they sought help.  They were told to see a geneticist who thought because of Lucas’ unique hair texture that he had a copper related disorder.  

When Matt was only 3 hours old, Wendy was told he had Down syndrome. When we asked her how she felt receiving that news she told us, "I think I every emotion known, I was going through. I experienced shock, fear, trauma, devastation, anger. I thought, what did I do? Why me? I was afraid that my life had just been ruined'

During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that is incompatible with life. Devastated, Madison thought about the possibility of carrying their son as long as she could, so they could donate his organs. They learned to qualify for organ donation, he had to be carried to 36 weeks’ gestation, and weigh at least 6 pounds- this became their goal. After delivery, their son, who they named Cameron, was placed on Madison's chest and she said it was “the most magical, best feeling in the whole world.” Doctors confirmed there was nothing they could do to intervene. Madison and Ty said they were confident Cameron didn’t feel any pain, and it was the best decision for them. Ty said that when he got to hold Cameron that “it was perfect, the world was perfect, everything was right.” Came

First signs something was wrong  Erika and Steve first noticed something was different with their son Blaise when he was 18 months old. Erika recalled, “He went to daycare and we would go in and notice that all the kids are playing in one area and he's over to an area by himself.  He always did individual play.” That wasn't the only thing she noticed.  She shared that one of the most telling signs that something was wrong was when she dropped Blaise off at daycare.  The other children would cry for their moms with intention and Blaise would just cry.  “He wouldn't cry for me, he wouldn't cry Mama Mama.” Erika recalled.  Steve noticed Blaise was delayed in speech and was missing developmental milestones. He noticed  a few more things which he shared saying, “Some of the behaviors, he would get fixated on say ipad or you know one particular thing and then he would stay on it. He also made these peculiar noises like all day long.”   After searching on google, Steven thought that Blaise had some o

utero something was wrong and were candid about their worries and stress.  When Hadley was born all of that changed. 

for good.  She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.

Dani and her family fought hard to receive an official diagnosis for her daughter Hayden.  After many specialists they finally received a diagnosis of DDX3X.  So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion. 

Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single.

Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future.

Lily was born at 24 weeks gestation weighing only one pound. Lily is a twin and unfortunately, her sister was stillborn. Lily has Bronchopulmonary Dysplasia. Her mom, Jess talks about the grief of losing a child while dealing with the news her daughter had a disability.

In this episode, we dive into the history surrounding the formation of the Special Olympics. We interview Rebecca Ralston, who is the director of the Young Athletes Program of The International Special Olympics.

Amy Jandrisevits created A Doll Like Me, so kids with physical differences could love and cherish their very own doll that looked exactly like them. She personally makes each doll by hand, and to date she has raised more than $225,000 to help off set the financial burden for those who could not otherwise afford a doll.

Candace comes from a big family; 11 children to be exact. The youngest child was born with Down syndrome. Candace shares her special relationship with Angelita and how she has impacted her family and life for good.

In this episode, Gerald talks with Josh Veach, the co-director for Go Shout Love. A cause-driven for-profit  business that raises funds and awareness for families on unique medical journeys.  Go Shout Love The formation of Go Shout Love Go Should Love was first created by Kristen Estock in 2014.  She used her blog as a platform to tell a family’s story about their child who had spinal muscular atrophy or SMA.  Now Go Shout Love is a cause-driven for-profit business that raises awareness and funds for families with rare medical needs.   As a for-profit company, Go Shout Love has an online store that shares 50% of the proceeds to directly help families. Josh Veach, the co-director of Go Shout Love shared a few examples of the type of care Go Shout Love provides.  He said, “For some families that might look like helping contribute to the cost of repairing or getting a new handicapped accessible van or making their home more handicapped accessible.” Josh also explained how each month, Go Shout

Denise shares how her son, Matt, who is on the autism spectrum inspired her to create two amazing companies that strive to better the lives of people with disabilities.

Katherine has a sister she never knew existed until she was 12 years old. A sister, who is profoundly disabled was placed in an institution as a young child. Katherine reconnected with her and has become her guardian.

Dr. Gerald Nebeker talks about a few adoption agencies that help facilitate international adoptions for children with disabilities. In this podcast you will also hear from Michelle, the CEO of Reece’s Rainbow as well as Kecia and Chris who have adopted two children with Down syndrome from the Ukraine.

Dr. Gerald Nebeker talks about early intervention services that are available to children with developmental delays and disabilities.  Gerald speaks with Kristin who is the director of the Early Intervention program at RISE. She explains who is eligible and the purpose behind early intervention. Early Intervention According to the CDC, early intervention is a term used to describe services offered to children ages birth to three with developmental disabilities and or developmental delays and their families.  There are several different types of services offered through early intervention. Depending on what the child needs, they can receive the following services: speech therapy, physical therapy, or occupational therapy. Each state has their own early intervention program.  These programs are publicly funded and provide services at a reduced cost or for free for any child who is eligible.   Early intervention is focused on ages birth to three.  This is a critical learning point in a child’s life. 

As soon as the neurologist saw Elie, he knew she had a serious condition and soon after diagnosed Elie with infantile spasms, which is considered a medically catastrophic seizure disorder. "It was heartbreaking," Eric said. "I remember thinking that I didn't know what to think. I didn't know what to expect. It was a whole road that we couldn't see in front of us."