Sakura - beautiful cherry blossom
Thanks for taking the time to visit my JustGiving page.
We are hoping to raise money for our precious daughter Sakura, from birth she was rushed to London for an under developed heart value, 2 days later she was fine and sent home, another 11 days in hospital with a cold, we all went home.
4 months old I was told she had a scoliosis spinal curve of 19 degrees and they would observe her, but would be tested out with a full Lycra body suit first of her age to be tested on. In the meantime, she was seeing portege to help develop her skills.
After observing tests and scans were told at 4 years old over a telephone call she had a very rare neurological disorder called jouberts syndrome and cerebral palsy, out world was devastated! It was a blemish on her brain and life expectancy was unpredictable, that wasn't too stop us, just after we told this, she starting having epileptic seizures, which is part of the syndrome, so we had another 2 years sorting out with medication to calm the seizures, worst time in my life in and out of hospital.
The next blow to us, was in the latest scans for scoliosis, she had changed from the lyrics suit to a spinal brace, trial and error we found a removable one worked out best. Her scan showed she had a spinal curve of 75 degrees now at 7 years old, the only option now is spinal growth rods which I'm hoping will help her along in her motability.
All these events haven't stopped us from giving Sakura the best life she can have, we make do with what we have and are so proud of her. Too be told at 4 years old that she wouldn't walk or talk, when now a very determined little girl is starting to make words, uses an iPad to make sentences of her needs and cheekiness X and last summer she just started crawl like a caterpillar along the floor, I never knew she could do that, as we sat giggling I was crying with proudness! She is starting to take steps with her walker, so the brand and labelled syndrome and diagnosis we were given I don't follow now, it's all looking for a bright future for her and now planning for what I believe she is able to accomplish with hard work and determination!
If you are able to spend a few pennies to help my daughter with brightening her future prospers learning to walk and talk like you, every little bit helps xx thank you xx