Ikigai Apparel will be supporting fundraising for Annabel to have crucial Intensive Physiotherapy treatment. From 1st October – 31st January 2018, Ikigai Apparel will be donating 15% of all sales from Holly Leaves this year to Annabel’s treatment.
Holly leaves are available in gold, rose gold and silver for £35.00
Even if you don’t want to buy a holly leaf, you can donate by following this link
Annabel’s father, Paul Trueman, shares her story:
Our beautiful daughter, Annabel, came into our lives in March 2012. Early on we knew as parents that something wasn’t quite right with her development. She wasn’t able to sit at the appropriate age and then when she reached 6 months of age, she started to have seizures. Initially, this was diagnosed as West Syndrome, which is a severe epilepsy syndrome composed of infantile spasms. As time moved on, we eventually received her diagnosis of COL4A1, which is an extremely rare genetic condition. As a result of this, she has quadriplegic cerebral palsy, uncontrolled epilepsy, severe visual impairment and other issues, but all of these still never get her down. We then started on the journey of trying to help her overcome these many difficulties and obstacles life that has presented her with.
In September 2017, with Annabel being 5 1/2 years of age, we started her on an intensive 3-week physiotherapy programme at the Footsteps Foundation in Oxfordshire. The progress she made in that period has been nothing short of amazing. When she started, she could only manage about 20-30 seconds sitting, with her legs crossed and arms stretched out, hands on the floor supporting herself. At the end of the 3-week programme, she was managing several minutes with only the occasional brush on her arms by the Physio.
The strength in her torso and neck is so important for Annabel, as this means she can support her head easier and therefore use her hands and arms more, which will aid her communication as she develops and grows. The improvement in her overall quality of life cannot be understated, it is massive.
As parents, we have understood that this physio needs to become a regular part of Annabel’s life and this is why we have set up the JustGiving page. Unfortunately, this type of physiotherapy is not funded by the NHS and is quite expensive, although we think still represents amazing value in the results it has delivered. We have met other families whose children have been going to Footsteps for many years and to see their children achieve such amazing milestones, from similar starts to Annabel gives us incredible hope.
We would be so very grateful for any help anyone can give.
To all the people that have donated so far, this is hugely appreciated and your generosity is truly humbling. Thank you.