Hii, my name is Ashley and I'm the proud auntie of Grace, who is 13 months old. When she was 4 months old my sister (Cassandra) and Jordan found out she had a extremely rare genetic micro-deletion (19q12q13.11), so very rare that the specific coordinates that are deleted within that number no one else has. While this provided some information, it provided more questions than answers. It told us that she would have feeding difficulties, gross and fine motor skill delays among many other challenges.

 

Despite Grace's challenges she is so full of life and she has never stopped trying, even when her body makes things harder than they should be. With this diagnosis she has to work twice as hard for things most of us take for granted - sitting, taking steps, saying words, feeding herself, and even playing.

 

Grace's medical team believe that early, specialized intervention is key - and we've found programs that could make a life-changing difference. These include therapy at On the Ball Therapies in Kanata, and intensive, condition-specific programs at SMILE Therapy in Toronto. These aren't just regular therapy sessions. They're hours every day of one-on-one physical, occupational and speech therapy with specialists who have helped children like Grace make breakthroughs once thought impossible - first steps, first words, first moments of independence.

On The Ball: Pediatric Physio and Occupational Therapy

Intensive Therapy Model - SMILE Therapy for Kids

Her parents have already paid for Grace's very first intensive program this September, determined to give her the best start they possibly can, on top of weekly one-on-one therapy. But to keep this momentum going into the new year, we need your help. The cost is overwhelming. While a small portion may be covered by insurance, coverage is capped at $2000 per year - and Grace's regular weekly therapy is already $140/week (weekly therapy alone, they max out within 3 months). These specialized programs are not funded by the government and each intensive session costs $150/hr, on top of travel, accommodations and basic living expenses while away from home. As of right now, her medical team is advising to do these intensives every 3 months.

 

Your generosity will go directly towards:

       - intensive therapy program fees ($150/hr x 4 hr/. day x 5 days = $3000 every 3 months)

       - travel between Kanata and Toronto

       - meals and daily living expenses while away from home

       - specialized therapy tools and equipment

 

For kids like Grace, early intervention is everything, the sooner we can get her into these programs, the better her long-term outcomes may be. If you can give, no matter the amount it would be so very appreciated and it would help Grace work towards a more independent and joyful life. Even if you can't donate, sharing her story with friends, and family will help more than you know.