Once upon Ellie

Hello! I’d like to introduce myself. I am Helene Larocque. On February 23rd 2023, I received the greatest gift - my granddaughter Ellie was born. But what a lot of you don’t know, is that my precious little granddaughter was born blind. Since learning of her disability my daughter-in-law has not been able to return to work. Ellie is a tactile baby and requires more one-on-one care. Touch is her main sense of security. I am truly blessed to have Kristina as Ellie's mother. She is one of the strongest women I’ve ever known. I admire how she manages and holds everything together for the family. My son Justin, is a strong support for Ellie, Mia (their oldest daughter) and Kristina. He is truly an amazing father. When he is home, he takes charge and cares for his family. Together they keep things running smoothly to provide the girls with a well-balanced family dynamic. But as a mother, it's difficult to see your children struggling. I can see the financial stress that this situation has placed on this young family. Therefore, to offset the costs of now being a single-income home, I am organizing this fundraiser to support Justin and Kristina in providing for my granddaughters. And I humbly ask for your help.

Below is the diagnosis and prognosis for Ellie, and a day in the life of by my daughter-in-law Kristina.

The day my daughter was born was supposed to be a joyous occasion, but instead, it was filled with worry and fear. When she arrived, she struggled with birth asphyxia, and soon after, it became apparent that her eyesight was not developing as it should. At just 4 months old, she was diagnosed with ONH (optic nerve hypoplasia) and also has hypoplasia of the corpus callosum, leaving her legally blind with no light perception and facing mental delays. Despite these challenges, our daughter is a bright and cheerful girl who brings us immense joy. However, her daily struggles are evident as we navigate through each day with her. Communication with her requires patience and repetition, as she relies heavily on routine and consistency. Simple tasks like getting dressed, eating and leaving the house become more complex, with each step needing to be carefully guided and explained. Providing her with the necessary support and care is a full-time job, making my return to work impossible until she is older and more independent than most children her age. Her blindness also brings on other difficulties, she is still in the process of learning basic skills, such as eating pureed foods, rolling over,sitting up and has disruptive sleep patterns as she struggles to regulate her internal clock and often wakes up multiple times throughout the night. We are taking things one step at a time, ensuring she receives the extra support and assistance she needs along the way. In spite of the challenges we face ,raising a blind daughter is a daily lesson in the true meaning of life. She is fortunate to have a close and supportive sister who is eager to learn how to assist her in over coming challenges. Her willingness to be by her side and provide support is nonetheless amazing. Though she still wishes for the ability to see and struggles to comprehend why her visually impaired sibling cannot. As parents, it is heart-wrenching to witness the struggles she faces and to grasp the additional obstacles she must overcome in a world that can be unforgiving. Nevertheless our daughter's resilience and spirit inspire us to continue to provide her with the love and support she needs to thrive in a world that can be challenging for someone with her unique needs.