Ryan’s Story

Ryan was born at 28 weeks gestation, and battled mitochondrial disease.  He relied for much of his life on a ventilator to breathe, a central line for nutrition and blood products for anemia. But he was dearly loved and cared for by his parents, Kevin and Danielle, and his big brothers Colin, Shane & Taylor. Danielle spent countless hours reading and cuddling with Ryan, playing Thomas the Train Engine and Littlest Pet Shoppe. Ryan did not have a long life, but every day he knew he was loved by his family. Always loved. When it was time for Ryan to go to Heaven after just 20 months Ryan’s family was determined that he spend his last days at home.

“It’s so very important in those incredibly precious hours to be able to just be a family, sharing moments, loving each other, and knowing their child is cared for in the best way possible. I believe Connor’s House will make these moments very special to these very special families and children,” said Ryan’s mother, Danielle.

Gavin’s Story

Gavin, an adorable toddler with complex health care needs, loved to be at home with his mother Karen, father Adam and sister Madison. Gavin spent more time in the hospital than out as he battled continual blood infections, blood pressure instability, consistent fevers, and other life-threatening symptoms, due to complications of Mitochondrial Disorder and Macrophage Activation Syndrome (MAS).

This made his time at home all the more precious. When Gavin was with his family he loved to do everything any two year old little boy does. He enjoyed going to the park, the library and even on shopping trips with Mommy and Madison. He loved to watch movies while snuggling his little ducky.

Matthew’s Story

In most ways Matthew is like any other eight year old boy. He attends school, loves his Xbox, goes fishing and swimming with his family, and plays outdoors with his siblings Hannah, Noah and Joshua. In short, Matthew is a normal kid in all of his interests and loves.

But in addition to all these things Matthew also has Mitochondrial Disease and complications including diabetes, adrenal deficiency, and issues relating to his lung, heart and kidneys. On top of all these issues he had a brain tumor removed when he was four, which to this day causes issues with his hormones. As a result he checks his own blood sugar and ketones many times a day, and uses many medical devices to assist with breathing and eating.

Matthew refuses to let anything get him down. He works hard at physical therapy – especially in the pool! – and is committed to his education, family and living every day to the fullest extent possible.