Jewels for Jules | Rare Genetic & Neurological Disorder Awareness

Jewels for JulesSome of you may recognize this beautiful happy little girl as Julia, or Jules to her family. Julia’s parents have been my clients since she was born – and my friends for longer. Julia is honestly the happiest little girl I have ever met and it breaks my heart to be writing this post.

At a few months of age, doctors noticed a developmental delay in Julia. Recently, her doctors and specialists have finally confirmed a diagnosis and it’s devastating – a very rare seizure disorder. So rare that Julia is one of six documented cases in the world with this specific disorder and at 3 years old she is the oldest survivor.  Few things are known about Julia’s disorder, but what is known is that her seizures will become more frequent and harder to control through medication, her skills will digress and there is a high risk for cardiac arrest and apnea attacks.
Simpson-166 LCP

Over the last 3 years I have watched Julia grow. Her smile is so contagious you can’t help but be happy around her. And oh my gosh, her giggle – AMAZING!  Evie, the youngest but the “big” sister, loves brushing Julia’s hair and giving her kisses – they are always holding hands. The love they have for each other is so strong, they’re the perfect little duo.

Sitting on her own, standing with her leg braces and walking help of her specialized walker is such a beautiful sight.  She is such an inspiration to myself and everyone that knows her. With the help of her therapy team, the hard work of her mom and dad and of course Julia’s perseverance, she has come so far.

Julia’s mom has begun making “Jewels for Jules” to raise awareness for Rare Genetic and Neurological Disorders. Julia is just one of many living with Rare Genetic and Neurological Disorders.  Jewels for Jules aims to shed light on the struggles of all those and their families affected by these disorders.

Side Crop Jewels-44Here’s an excerpt from Julia’s mom:
“By supporting “Jewels for Jules” you will be helping us say thank you to our amazing Genetic and Neurological teams from McMaster Children’s Hospital, who worked tirelessly to find answers for Julia and our family, and in turn, may help to benefit another family like ours somewhere down the line. These ladybug keychains symbolise a number of things. They are a symbol of love, strength and courage. They represent understanding and acceptance for the simple fact that we were not all made the same, but that we all have a lot to give. And last but not least, let them be a reminder that no matter how tough life may get, that we can all find a reason to smile and be thankful each day that we are here together.”

LONG Jewels-64

I have my ladybug on my keyring and every time I look at it I am reminded of Julia’s strength, pure joy and happiness in life. If you would like to help support Jewels for Jules you can purchase a ladybug for $5 from myself (905 931 4893 | liz.czinege@gmail.com) or Katie (text 905 321 8369)

Much love,
Liz

2 thoughts on “Jewels for Jules | Rare Genetic & Neurological Disorder Awareness

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