Welcome to Julia's Village
Take a moment and think about all the opportunities you have in your life. The things you strive for, stress over, and generally give you the ambition to move forward in your everyday life.
Now think about Julia. Julia does not have the same opportunities that everyone else does. Her drive comes solely from her family who loves her so dearly that they will do anything to find a cure for CDKL5.
But it is wrong to think about this situation as something of loss, but rather a story of hope. Hope that one day, due to our actions and our determination to make the world aware of this rare genetic disease, that there will be a cure.
For the last couple of years, the small Romanian community in Southern Ontario has been getting together to fundraise, support Julia and her family, and raise awareness for this disease. Through this united goal, our community has been brought together and many new friends have been made.
There is an entire spectrum of people out there who are potential supporters of Julia and can help advocate for extended research. Not just for Julia, but for every child affected by this genetic disorder. If a community of Romanians can make a powerful impact, imagine the results if everyone were to be on board for finding a cure.
We ask that in a midst of your busy life, you take a moment to think about Julia, and the many opportunities she could have upon finding a cure. Open your hearts and think of the little girl whose eyes see a world of possibilities.
"My precious child, being precious is a very special quality. The rarer a gem is, the more precious it is.
My dearest daughter, when a person sums up the worth of the life, he/she values on many standards, but surely "dear" is a high one. To be dear is to have an unexplained, unexcelled worth, which, while not carried in the pocket, is carried in the heart. I love you my little one and I cannot even express how deep that goes. In any language, and with whatever words, you are my dear.
I will bend every effort, make whatever sacrifice just for the pure NEED of doing everything possible for someone I love so much." (Gabriela - Julia's mother)
Why we village...
"You are such a special and beautiful girl that brought a light into our lives. Whether you can tell us you love us or not, we know you do and know that you feel and understand our love. I cannot wait to be blessed with the opportunity of watching you grow up." (Marilena - Julia's friend)
"Julia is a beautiful little girl who has been waiting very gracefully and patiently for the world to get knowledgeable enough to help her unfold her hidden values and strength. She will show us amazing things which are not yet visible. We need to be and stay in action in order to allow these to happen." (Tunde - Julia's friend)
"We welcomed Julia into this world few months before having our twins. Such a sweet girl, active and always smiling...And then, CDKL5 hit unjustly and unexpectedly. We instantly wanted to help: the parents coping with the devastating news, fundraising and donating for the ongoing research, praying to God for a miracle. Indeed, Julia is our miracle; she is fighting back the cruel disease with the strength of a titan. We have to keep going and make things happen for Julia and her CDKL5 friends around the world. " (Cristina and Danut - Julia's friends)
"Julica is my dearest little friend. I would love to see her smiling more, like every child should...that's why I am part of her village, to help find a cure for CDKL5. She inspires the loving people around her to keep on HOPE-ing and fighting for a cure. She is my little miss sunshine." (Alina - Julia's friend)
" When I met Julia’s beautiful mom years ago, we discovered not only that we have the same profession, children close in age, but we were both ready to emigrate to Canada. The dream of getting out in the world and experiment a different life made our meeting so special. People come and go into our lives, only some are meant to stay and become more than a family. Away from our love ones back home we had to hold tight to each other. The truth is that friends and family show their true colors when times are tough, and Julia's family has been through those times. However, they have never let the light escape their eyes. They have never given up or failed to fight for Julia, and this is so admirable. They let their love for their daughter trump all the pain of CDKL5, and it's the reason Julia is such a fighter. We see Julia fighting every day, and it inspires us as a family to work harder and appreciate the important things in life. For that, we thank Julia and her family, and we will continue to support them in any way possible." (Lili - Julia's friend)
" Julia, our beautiful little girl. Such a journey we are on to help you connect to and understand our world. As I visit to teach you some new skills, the time spent is YOU teaching ME. You are a gift - with a gentle spirit - a girl who waits patiently for us to understand your world. Thank you, Julia, for this dance . With much love, Patti." ( Julia's friend and developmetal therapist)
" When I get into a tight place and everything goes against me and I think I could not hang on one minute longer, I think of Julia. This little girl gives us strength and reminds us that we need love, and we need to be compassionate and kind. Her smiles are precious and hard to be captured but they stay in my heart forever. I love Julia, this precious girl, with all my heart. Ica" ( Julia's friend)
" I have had the pleasure of knowing Julia's family for about three years now and you'd be hard pressed to find a family as loving, hopeful and dedicate family as this. I am constantly impressed and motivated by them. I am also impressed by how much this community comes together and shares in the caring of one beautiful little girl.
I wanted to share with you all why I think therapy is so important for Julia. The work I do with her on a weekly basis provides the strength, mobility and body awareness she needs to continue to reach her goals. We work on building up her muscles, maintaining her mobility and helping her achieve higher levels skills she requires later on down the road. I measure her progress in teaspoons, and since I have met her, I'm so proud of how far she has come. I look forward to continue to work with her and watch her grow and develop for years to come. Sabrina" ( Julia's friend and physiotherapist)