Therapy Services for Lily
Lily is a 3 1/2 year old girl who is always smiling and laughing. She has been through a lot since birth including heart surgery at 2 months old. She has a rare genetic disorder- 2q37 deletion syndrome (less then 500 cases reported world wide). Due to this genetic disorder, comes a lot of complications both medically and physically. Along with her heart issues she also has horseshoe kidneys, hydrocephalus (fluid around the brain), severe GERD which puts her at risk of choking and because of this is on strict purée only diet (takes many medications because of this), hard of hearing, non verbal and low muscle tone. Lily currently goes to Grandview Children's Centre for Physiotherapy, Occupational Therapy, and Speech Therapy but even with these supports she requires additional outside support. Currently Lily is unable to sit up on her own, crawl, or walk. Everyday we see her be the determined little girl she is and try to do these things but due to her low muscle tone she is unable to. Although she is lucky to receive all the above supports from Grandview Children's Center unfortunately there are still gaps within the OHIP services; where she must take up to a two month break which allows other children to access the services. Unfortunately these breaks are very long for a child who needs to become stronger (both medically and physically) and this is where additional Physiotherapy and Occupational Therapy services would help tremendously. Accessing these additional services privately is very expensive (thousands of dollars per year), but would make such a huge difference in Lily's life. These additional services would give Lily the chance to walk, crawl and even sit up on her own! All funding will be used to give Lily the life she deserves. Please help us be able to access more therapies for Lily. We thank you from the bottom of our hearts.+ Read More
Just wanted to send everyone an update as to how Lily is doing and how we have utilized some of the money... Lily has a music therapist that comes into the home which has been very beneficial for Lily. She now dances (in her own cute way by rocking back and forth or side to side) when the music is playing, she especially loves the guitar! She is learning how to follow direction and her favourite is playing the shakers. We have also used some of the money towards getting a pool for Lily which will hopefully be installed by the end of the month. This will help her gain so much strength as water is a very good way to increase muscle strength so hopefully Lily will be able to become more mobile (as she’s still not able to walk, or sit up on her own). Lastly, Lily has speech therapy which will hopefully help her to communicate better. This is still a work in progress, but I can tell she’s understanding more and more each day. I just wanted to thank everyone again for all your help, it means the world to us. Continued support will go so far with helping Lily live the best life possible. You are all so wonderful and mean a lot to us.