Inspiring life despite a diagnosis Orange Socks

Brittney and Derik share what SHINE syndrome is and how it has made an impact in their life.  Their daughter has been a joy in their life despite some of the difficulties that come when having a child with SHINE syndrome.

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.” Cameron lived for two hours and 43 minutes and Ty says, “for two hours and 43 minutes the world was perfect.”















When asked how that experience changed their lives, Madison said “it puts everything into perspective, our lives are so short. I want to be so positive; I want everybody that knows me to feel my love for my son.” Ty said that it had helped him to appreciate time and people more. He said, “I felt a new kind of love that I didn’t know existed, and that was special, it was so special.” Ty said advice he would give is that “your wife probably knows best. She has the closest connection, and she knows things that you don’t know or can’t experience, and you should trust her. I chose that whatever my wife would like to do, is what we are doing do. And that was the greatest decision that I’ve ever made. He said you get to experience good things out of it. Do your research, listen to your doctors they have a valued opinion, they are looking out for you as their patient, but this is your life.” Madison says the best advice she can give is to just acknowledge that it’s the worst thing in the world. For somebody in that situation, I would say I’m always here. I know it’s terrible but I’m always here.







Ty and Madison love to talk about Cameron. They want to take every opportunity to talk about him. Ty says "everyone apologizes and says, “oh I’m so sorry I didn’t know you lost your son.” Which he replies “don’t apologize, let me tell you about him.”

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 of the same signs and symptoms of someone who has Autism.  







Getting an ASD diagnosis







Most doctors will not give an autism diagnosis at 18 months.  Erika and Steven were able to get connected with a company that helped Blaise get early intervention services as well as getting into a developmental preschool.







After Blaise attended the preschool for a little bit, Erika and Steven worked with another company to get a formal diagnosis when Blaise was 2.5 years old. 







Being labeled as ASD was the fear







Erika shared an interesting perspective about receiving her son's diagnosis.  By the time he was formally diagnosed she shared that her and Steven had already accepted the fact Blaise was different and had autism.  Erika was afraid of what a formal diagnosis would mean for the care Blaise would receive. 







She shared, “My biggest fear, I didn't want to get a diagnosis, even though we believed he had autism because in my mind I didn't want them to stick him in a box.”







She continued, “Once he was labeled then that's all the care he's going to get. He was only going to get autism care and an autism teacher…and it's a bigger world than that and I wanted him to have all the exposure that he could have.”







To help ensure Blaise wasn’t put in a box, Erika started working at the school Blaise was enrolled in.  She gave a great example of how she has helped keep Blaise progressing.  She shared, “Because he has autism and because he has sensory issues..they put headphones on him, because that's what he needs.  When we have assemblies, I go in the assemblies and I take the headphones off…let's see if he can push through it. Don’t just give it to him because he has autism.”  







Steve shared that he feels like when some parents have a diagnosis, they automatically put up a glass ceiling of what their child is capable of. Not even trying things because of the child’s label.  “We wanted to treat him as regular as possible, give him the same experiences as regular children.”







Loving your child for who they are







Regardless of his disability, Steve said that he and Erika have loved, supported, and accepted Blaise for who he is.  He said, “Don't give up, once you get that diagnosis, it's not a death sentence.  Just focus on the early intervention, focus on the things that you can control and then eventually things turn out ok.” 







Erika and Steve both shared their joys of having Blaise as a son, Erika shared, “Just when he meets those little milestones…he had to work four times harder to do something that comes naturally to someone else.”

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.