Inspiring Life Despite A Diagnosis

About 8 hours after her twin daughters, Kay and Karen and were born, they were moved to the NICU because a nurse noticed some seizure activity. Shortly after, both girls were diagnosed with Spastic Quadriplegic Cerebral Palsy. After caring for her daughters for 41 years, Ann opens up about the joys and challenges she has experienced raising her daughters.

When Wil was born with Down syndrome, his father thought his world was over. He has since realized, what a blessing Wil is to family and strangers alike.

Kayla and Josh noticed their son Parker was falling behind in his development by about 12-months old, he was barely learning how to army crawl.  They went to a geneticist, and through genetic testing, Parker was diagnosed with ADNP syndrome– a genetic mutation which can include developmental delays, autism, and distinct facial features.  Josh and Kayla felt very fortunate to get a diagnosis as quickly as they did so they could come up with a game plan. Overwhelm Sets in After Getting ADNP Syndrome Diagnosis “I had already made up my mind,” Josh said, “If Parker’s got something, we are just going to ride this out.”  After receiving an ADNP syndrome diagnosis, he was ready to find resources, start therapy, and move on.  Parker was the 85th person to have been diagnosed with ADNP syndrome in the world. Kayla’s reaction was different than her husbands, “It was really overwhelming.”  For a few nights, Kayla had trouble sleeping because she was constantly thinking about ADNP.  She calmed a little after she contact

Laura’s mom was excited to announce to her other children that she was pregnant with twins, a boy and a girl.  When the babies were born, it was a complete surprise to see the girl, Annie, had Down syndrome.  Laura was eight-years-old at the time and little did she know, her whole life would be shaped because of her sibling with a disability. The Start of a Lasting Friendship Between Siblings One night Laura was feeling down about not having a close relationship with any of her siblings.  Her mother gave her life-changing advice.  “If you want to build a relationship with someone, then you need to spend time with them,” she said.  Laura started spending more time with Annie by pushing her on the swings, playing on the monkey bars, and giving her piggy-back rides.  Laura’s mother was thrilled because the activities she was doing with Annie were great muscle toning exercises. In high school, Laura participated in a Best Buddies program for anyone with an intellectual or physical disability.  This was another s

Ryann was a foster mom when she got a call about a baby with Spina Bifida who needed a home. She eventually adopted him and has enjoyed the journey.

After going through some challenging, family experiences, Mercedes and Andy decided to adopt a child with Down syndrome. They are forever grateful they did.

Connie has been taking care of her daughter with cerebral palsy, cognitive impairment, and a seizure disorder for 41 years. She finds happiness every day.

Courtney and John struggled to parent their daughter who had serious behavioral issues. Once she was diagnosed with autism, things drastically improved.

Emerson was diagnosed with Congenital Nephrotic syndrome as a baby. Life has been anything but normal, but a kidney transplant will change everything.

Shortly after Tell was born, he was diagnosed with Syntelencephaly, a rare condition. His family has learned to find joy in their daily challenges.

Jennifer's whole life has been shaped by her sister, Vanessa, who has Down syndrome. She wishes everyone could experience the wonderful life she has had.

Tyson has Fragile X syndrome. His diagnosis has made life anything but normal but his family learned to adapt to his needs and still enjoy family time.

Having a sibling with autism and epilepsy was difficult for Stephanie for many years. However, she loves her brother dearly and is very grateful for him.

At age 7, Jace was diagnosed with Cockayne syndrome, a rare, fatal disorder. To give him the best life possible, his mother was his strongest advocate.

Having a brother with MPS was challenging for Nathan growing up. He is now taking his experiences and helping others who have a sibling with a disability.

After finding out her unborn baby had Anencephaly, Summer decided to embrace her time with him by carrying him to term and then donate his organs.

Brenna was born with Harlequin Ichthyosis, a rare skin condition that requires constant care. Her condition teaches that beauty is more than what you see.

Max was born with numerous medical complications involving his heart and brain. His short life brought his parents much joy and peace.

Will has three older siblings and all of them have a disability. His childhood wasn't "normal" but his siblings have shaped him into who he is today.

Chase has Chromosomal Deletion 9Q, a rare genetic condition, and a cleft lip and palate. Despite all the unknowns, his parents live each day to the fullest.