Alice: One of a Kind

So the time has come for me to finally put pen to papering write Alice’s story. I have tried on many occasions over the past three years to do so but as you know dealing with every day to day life with a loved one that has a death sentence hanging over them is really hard. Life is like…

Beautiful Bella

Six months ago we never would have thought but our lives changed forever. Bella developed a bad chest infection and after a week of not really wanting to do much apart from sit on the couch Bella did not want to walk. She would scream like she was in pain and take really slow steps and hold on to…

Sweet Isaiah

Isaiah was born on October 13th. He was healthy and cute as a button!

Well, we thought he was healthy. After his 1st birthday, I started to worry because he wasn’t walking yet. I asked the pediatrician but she told me that he would walk when he was ready.

Emma’s Dazzling Smile

Emma Hope Gilbert was born on October 6th, 2010, a beautiful and seemingly healthy 7 pound 3-ounce bouncing baby girl.

She became an answer to her parent’s prayers and a very welcomed baby as she was the first grandchild on both sides of the family. Ryan and…

Micaiah’s Journey with Vanishing White Matter Disease

Until January 22, 2016, two-year-old Micaiah was a completely normal child.

The pregnancy and birth were problem free, and she met every developmental milestone. She was an unusually sweet and cheerful child…

Princess Lily

Lily was born a healthy baby girl on November, 09 2012. She hit all her milestones normally.

Tadan’s Journey

Tadan was born a normal boy. Bubbly, chunky and happy baby. He hit all milestones but never got a full run.

Double The Luck: Carter and Ryder

They say it’s a one in four chance that your child will have Leukodystrophy if you and your spouse carry the gene. I guess our family is “lucky” because we have two children with VWM Leukodystrophy.

Cure for Isabella

Ever since my niece has been diagnosed with Vanishing White Matter Disease (VWM), I have been on a quest to #findacureforvwm.

Isabella was 2 yrs old when my sister noticed, that she seemed to stumble more than other kids her age. Her pediatrician said Isabella would…

Sweet Baby Vance

As a father, all you want to do is provide for and protect your family. There is a welcome ignorance to the dangers in life, the fact that children are not immune from disease and death. I relive daily, that walk to the meeting room in the children’s hospital, the news that our son has an incurable condition…