Children battling mitochondrial diseases have to fight for their lives every day and their entire families are fighting alongside them. We believe they shouldn't have to fight alone and we want to help them. In doing so, we want to honor the wishes of our son Noah who is nearing the end of his fight and wants to help other children who are sick like he is.

We've identified five main ways to help:

1. The Dragon Club: This is for children battling mito or other catastrophic rare diseases. We hope to help these children through a bead program where the children will receive a distinctive bead every time they undergo a medical procedure or experience a medical transition (loss of ability to eat, loss of ability to walk, etc.). These beads will acknowledge and honor the battle these children fight every day. We also hope to provide doctor's office busy bags full of fun activities for long clinic visits, and to provide hospital-friendly gifts to relieve boredom and offer encouragement during the many long hospitalizations these children must endure.

This name was Noah's idea.  He loves dragons and we often tell him how brave he is for fighting dragons every day.  The dragons he fights don't have wings and tails.  Instead, they come in the form of IV drugs, painful medical procedures, hospital visits, transfusions, and more.  We want to encourage and support sick children as they fight their dragons too!

This name was also Noah's idea.  Octopuses are Noah's favorite animals and he thought that brothers and sisters of sick children would like to have the word "octopus" in their club's name.  We like the idea of wrapping up these siblings with many arms of love as if they were getting hugged by an octopus.

3. Memory Making: Most of the families we serve will lose their children. We want to help them capture memories by providing them with handprint kits, voice recordable ornaments and frames, gift certificates for photo printing and photo albums, etc.

4. Family Support: When a child is sick, the entire family suffers. The stress and financial cost can be staggering and the family suffers frequent separations when one parent spends a great deal of time in the hospital with the sick child. We want to relieve some burdens by providing gift certificates for gas cards, meals, and family outings; sending encouraging books and CD's; and assisting with other needs that individual families may have.

5. Knight and Day Prayer Partners: This will be a network of volunteers matched with the families that we serve. The volunteers will read the blogs/websites of the families with whom they are matched, pray for them, send notes or gifts of encouragement, and be sure to inform our board of directors of any special needs that arise for the family.

We chose to play on the words night/knight because our volunteers are fighting for the families they serve and are praying for them night and day.