When our daughter Alice was born in March, 2017, my husband Alexander and I were thrilled. Our beautiful baby girl was perfect … 10 little fingers, 10 little toes and she seemed to be a very happy and healthy baby. When Alice was 6 months old, we still thought everything was normal as she was a cheerful and responsive little girl though perhaps a little slower to progress than other children her age.
It wasn’t until Alice was a year old that the dark cloud drifted in and we realized something was terribly wrong. She had thus far displayed absolutely no vocal sounds. She had never crawled, she couldn’t sit up and she wasn’t able to eat any solid food. The specialist told us that our beautiful little girl had a progressive disorder and to make her as comfortable as possible because she didn’t have long to live. I told the doctor NO! I knew in my heart that they were wrong and we were not going to lose our dear little girl so soon. The doctors performed genetic testing and found that Alice was afflicted with an extremely rare genetic disorder that affects her brain development and related motor function.
This condition will result in Alice experiencing life-long symptoms and complications – both physical and mental however the good news is that research has proven that the condition is treatable with intensive therapy. The bad news was we didn’t have the money to afford the expensive treatments Alice needed so desperately and they weren’t covered by provincial health care. We knew she had so much potential we just had to do something. We applied for funding from Variety and they – thanks to the generosity of their donors – were able to push away the dark cloud and provided Alice with the intensive physiotherapy sessions necessary so that she could achieve her motor milestones.
And achieve them she has! The doctors said Alice would never walk. Alice has proven them wrong and she can now take a few steps with minimal assistance. She also crawls on her own while exploring her expanding world with delight. Her motor skills have improved dramatically and that has made life much easier for the entire family. The additional exercise she gets with her new mobility has also improved her appetite and enabled her to sleep through the night. One of the effects of her condition is the inability to sleep as the brain just doesn’t shut down. Thankfully we are now all able to enjoy a good night’s sleep.
Alice is very proud of her achievements but can see she is different. Now three years old, she attends playschool and wants to take part in group activities and be just like all the other kids. We always let Alice know that her condition is a part of who she is however it does not define her. Alice loves her therapy and happily goes to every session singing and smiling. When at the park, she always looks with interest and glee at other kids on their bikes so when Variety gave Alice her very own adaptive bike last February during the Variety Show of Hearts Telethon, she was thrilled beyond words. The bike will not only enable Alice to ride with the other kids in the park, it will aid her greatly in developing her balance which is something that is crucial to her future mobility progress.
Alice has come so far since beginning the therapy funded by Variety. We are so proud of our little girl. Alexander and I cannot possibly ever thank Variety and their donors enough for what they have done for our little Alice. Our entire family has been treated with love, respect and dignity and Alice now feels like a big girl with a bright future! – Roxanne, Alice’s Mom