09 May Shout out to us ROCKSTAR moms!!
In light of Mother's Day I have been thinking about how Moms are truly the ALL STAR ROCKSTARS. We wear the world of our family on our shoulders and we fight to do it with a smile. We know what it means to...
Blog
04 May Especially Beautiful Fundraising Update
Virginia Kimonis, MD Especially Beautiful Fundraising Update April 2016 NUBPL is a “rare” mitochondrial disease. Research activities represent hope for the lovely Spooner girls and others with this rare condition. In fact, the field of clinical genetics represents a promising pathway to new and better treatments for...
17 Sep It’s not easy no matter how it may look – Day 1 here we go!
As a mom with two beautiful special needs daughters I have always lived by the rule to stay positive and stand by our decisions no matter how difficult they may be. The decisions of what doctors to see and trust. What testing we feel is...
08 Mar I Found My Purpose!
OK, so I have to admit I have not read "A Purpose Driven Life" but I don’t have to read it to know how important it is to have a purpose driven life. We all look in different directions throughout our lives searching for...
22 Oct I am scared …
There are certain times throughout our family's struggle with a rare disease that I am actually scared. Now is one of those times. I try so hard every day to stay positive and strong. I sometimes feel like I am about to break...
18 Sep An overdue update on Cali and Ryann and their Rare Mitochondrial Disease
I am FINALLY getting around to update everyone on our beautiful Cali and Ryann and their Rare Mitochondrial disease. I am sorry it has taken me so long but life with three kids, work and fun (of course) is a whirlwind and time flies...
11 Feb Especially Beautiful – What an inspiration !
The world of Rare Disease is never a world we wish to be in. When we found out that Cali and Ryann both inherited a recessive gene that Rick and I both carry our world became just that - RARE. When our beautiful...
06 Jul Our big ball of HOPE keeps on rolling!
We can't say thank you enough to everyone for their love and support. Your love and support is what keeps us going and keeps us strong. We are filled with HOPE and optimism. It's an incredible feeling after 14 years of struggling with...
21 Mar Do I dare to dream?
I wonder if it is better to set high expectations and maybe fail or to stay grounded and be pleasantly surprised? It has been about a month now that Cali and Ryann were diagnosed. So far we know that Rick and I share...
27 Feb World Rare Disease Day is tomorrow! Here is our speech about HOPE!
World Rare Disease Day is tomorrow !!! Rick and I were invited to speak at an event. Below is our speech about HOPE! We are excited to share it with you and the world in honor of Cali, Ryann and other families struggling...