Together to get her stronger is our ongoing mission.
To make everyday life easier for Julia remains our focus.
To fund research directly to the scientists is our hope that a treatment of CDKL5 will come fast enough for Julia.
Therapies and special equipment
Therapists are the most important people in Julia’s life. Physiotherapy, occupational, speech, vision, hydrotherapy, equine, craniosacral therapy have replaced piano lessons, ballet, dancing, skating and so more, all that a little girl would do at her age.
Julia needs specialized equipment for standing, sitting, walking, positioning, bathing, mobility. Everyone is working together to build on each other’s efforts and must constantly adapt to both anticipated events and unforeseen challenges.
The friends around Julia’s family have teamed-up and organized various events to fundraise for her ongoing need of therapies and special equipment. It really takes a village to raise a child with special needs.
Believe in me and I will keep going!
TOGETHER stronger
“Never doubt that a small group of thoughtful committed citizens can change the world;
indeed, it's the only thing that ever has.” (Margaret Mead)
What YOU can do:
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Volunteer your time for upcoming events.
There are many tasks when organizing an event. Any help counts! If available, please send an email using Contact page.
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Donate your birthday gift.
Instead of buying a gift, tell your guests to make a donation for Julia on www.hopeforjulia.ca.
You and your guests will receive the information how the money were used.
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Events planning.
If you have a fundraising idea, we need to hear from you! We are always looking to identify and pursue new funding opportunities.
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Donate goods for garage sale events.
We organize 1-2 times per year a garage sale. Please send an email using Contact page in case you have new or gently used items — like clothing, appliances, electronics and furniture, etc - that you would like to donate.
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Awareness, awareness, awarness
“ Change starts with awareness and once infected with knowledge the mind can never return to ignorance." (Rebecca Costa)
You can make a difference. Just talk to a friend, pick up the phone, read about cdkl5 and advocate for Julia, she cannot. CDKL5 is a very rare genetic mutation on the X chromosome, which leads to a devastating disease. The mutation occurs spontaneously and randomly. Any mother in the world gets the same probability no matter what the circumstances; age, color, geographical area, social status do not count.
There is HOPE! Science and HOPE go together!
We are committed to help researchers to make HOPE happen. We have contributed to the research for cdkl5 disorder and will continue to do it. The outpouring of support is really what has kept us going throughout this entire process and TOGETHER we are going to make the world of a difference for CDKL5 research.
It is so unfair to Julia, and all of the other children suffering from this rarity. They do not have the chance to experience a normal life. They did not do anything to deserve this fate!
We want to make sure the research will give those affected by CDKL5 disorder the opportunity at a normal life. CDKL5 is not very well known as yet comparing to the more prevalent sicknesses that exist, but its recent discovery hints that there are more cases to come. We hope to see a breakthrough in the treatment and in the prevention for all other unborn children.
The Dress to Unite - Little Green dress
The travelling little green dress tells us that we are not alone. Somewhere else, someone else is carrying or beginning to carry the weight. The little dress travels from country to country and brings us together in our dreams and hopes for the ones we love so dearly.
The dress belongs to Amber Partridge and it left Somerset, England in the summer of 2011. The dress is currently working its way across the globe. Julia received the dress in April 2012 and passed it on to the next cdkl5 child in Canada.