Ryker’s Story- Part #3 (Siblings)


Rare Diseases and conditions not only impact individuals, but families and communities. Each person diagnosed with a rare condition is supported by friends, family, caregivers, therapists, social workers and medical providers.

Meet Chase, Ryker’s big brother…

As a newborn, Ryker stayed at a NICU several hours away. We were hugely fortunate that my mother was able to drop everything and stay with Ryker’s 21 month old brother, Chase, for 3 months. How are you supposed to balance a newborn in the NICU and a toddler at home? Both need your attention and there is a lot of splitting up that has to happen to give it to them both. Ryker was 5 weeks old before Chase was finally able to make the trip up to meet him. It was a long trip for a then 21 month old. We had always tried to FaceTime with Chase so that he could see his brother and know where we were. He identified Ryker as “Baby Brother Ryker” and was so sweet when he finally met him in person. We tried to make a vacation of sorts of it, when we finally brought Chase up to Philadelphia.

As the weeks dragged on in the hospital, we noticed changes in Chase. We still don’t know how all of this has affected his mental, emotional and physical well-being. Crying when he saw out suitcases or when we tried to drop him off at daycare. Crying for Grammy instead of us when he had a bad dream. Trying to teach him to play and interact with his brother, but not touch any of the cords coming out of his body.

Big Brother Chase is resilient though and loves his brother dearly. He just celebrated his 3rd Birthday a few days ago. He had a big party at the house but little bro hid in his room to stay away from yucky germs. Ryker is 17 months old. This year was the first year we felt we could have a holiday as a family of four, as last year we had just gotten Ryker home from his first of many PICU stays the day before Christmas and we were just exhausted. This year Chase was so thoughtful… he would open one of his presents and ask us to put it together, take the tag off, cut it out of the box, etc and Chase would say oh now I can open a present for Ryker! He was so sweet to open them, show them to him, try to help him hold onto it. He is such a wonderful big brother to Ryker.


If you are interested in supporting the PURA Syndrome Foundation during the month of February or in making a donation in honor of someone #PURAPerfect in your life, please consider a donation

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