Thank you all for your wonderful work. Louise was so excited to receive it.
She was so excited to see all of the dogs, even Timmy wanted to check them all out.
Thank you to all of the people who put their time and effort into making this, Louise is looking forward to snuggling up under it tonight.
When Louise was born she had a clubfoot and had low muscle tone. She was in hospital for 3 weeks as she lost too much weight and developed jaundice. Other than that we thought she was a healthy baby. it wasn't until she was a year old when we realised she wasn't meeting her milestones, she wasn't crawling or attempting to walk, she was not able to eat solid foods. We spoke to her doctors who continued to say she was developmentally delayed and she would grow out of it. We didnt believe the doctors and tried to have her tested but the doctors refused, this went on until she was 2 1/2 years old.
We moved to Australia where i grew up when she was 2 1/2. After meeting her wonderful Paediatrician he immediately started tests, after two more years she was diagnosed with Myotonic dystrophy, we then found out it was genetic and her father has it as well. Louise didnt start walking until she was 4, she started talking at 6.
She started school at Yarrabah Special School when she was 4 years old. She has come so far since she started, they have been wonderful.
Louise has had 3 surgeries, she had two on her teeth due to them being mineralised, and crumbling. When she was 7 she broke her arm in two places and dislocated her elbow from a fall, because of her low muscle tone it was worse than a normal break.
She struggles in cold weather with her hands and the myotonia. And she has stretches she is required to do daily for the tightness in her feet to avoid surgery. She gets embarrassed when she has a toileting accident when she is unable to hold it in.
She has anxiety about being in large groups of people and gets embarrassed when people can't understand what she says.
For a long time Louise struggled to understand her emotions when she was tired and how to express them and it resulted in behaviours that were destructive. She suffers from fatigue, and often is unable to keep up with other kids when playing.