Family Testimonials

 “ To hear there is another child with Jack’s variant – I’m verklempt. I have so many questions and have been longing for a message like this. I am so impressed with how much work Alex has done and how much passion she has for this genetic mutation that affects all of our children. There will be a day I hope to be her other hand. I’m fully vested but not capable of helping right now. Until then Alex, keep doing all the amazing things you’re doing for our children and those who are born in the future with the same genetic makeup”.

-Heather Steiger, Jack’s mom

“To be able to connect with families around the world experiencing the same challenges as we are, is invaluable. We are able to give each other emotional support and share the ups and downs of life with VAMP2. The VAMP2 Facebook page and Alex’s website are vital if we are to find treatments and a cure for VAMP2. The power of communication and sharing of information is the key to helping our children live their best possible lives. To achieve the best results for VAMP2 patients, we need professionals from around the world working together collaboratively with families. This will give our children the best chance for a bright future”.

 -Cheralee Kemp, Will’s mom.

"Take good care of yourself. Rest. We need you so much and we appreciate all your energy. You are amazing.

Our greatest wish is that there is a cure that allows  Jon to express when he is in pain or happy, if he is thirsty or hungry, or wants to be pampered. That allows him to continue improving on a physical level to be able to move around on foot. 

Most importantly, may he be happy and not in pain. For others who have the disorder we wish they fix the problem from an early age to not be as affected as Jon. 

-Nati, Jon's mom.

“My hope is for Lydia not to have to struggle with everyday life. To be able to live happily, no longer with the huge struggles she has to deal with now”. 

-Marie, Lydia’s mom.

"Thank you for everything you are doing for our children. This search for a cure has sparked a little hope in my heart.  I hope with all the heart of a mother who suffers from her daughter’s situation, that this treatment can heal her. Or at least give her some independence and help her communicate her needs with me”. 

-Katia, Asia's mom.

“Our main wish and goal is to find a cure for Millica’s condition so that she gets a chance to live a normal and healthy life with her family”. 

-Jelena,, Millica’s mom.

“Our main wish and goal is to find a cure for Millica’s condition so that she gets a chance to live a normal and healthy life with her family”. 

-Jelena,, Millica’s mom.