Annie (11) was diagnosed with MPSI at nine months old and had her second stem cell transplant only aged one year and four months. Recently, she celebrated her 10th post-transplant birthday and very much looked forward to starting secondary school in September. Her mum Donna shares how the whole family prepared for this exciting new beginning and how Annie experienced the first days in an unfamiliar environment.
A change is coming
Annie absolutely adores school and mixing with her peers. So, she is extremely excited about her new chapter and not only because she will be joined by her two cousins. Together, they enjoy chatting about their new uniforms and school bags and what big school might look like for them.
As Annie’s parents, we are extremely proud that she has reached this milestone in her life and are keen to see her settled into her new school albeit also awaiting a surgery date for Annie’s hip replacement.
Annie is academically bright and will transition to a mainstream school, we wish her all the best of luck.
Getting ready
To support the transition from primary school to secondary school, multi-disciplinary meetings have been held to co-ordinate everything and to ensure that Annie’s educational, physical and healthcare needs will be met safely.
Annie’s statement of education has recommended the need for a classroom assistant to support her with her education and also to ensure her healthcare needs are met, i.e. management of her peg site, support with personal care tasks, as required. Annie also had this support at primary school level and her classroom assistant has chosen to transfer to secondary school with her.
This will support Annie to settle into secondary school and provides reassurance to us as we know her classroom assistant is competent with Annie’s needs.
Community Occupational Therapy and an MPS Society Support and Advocacy team member have visited Annie’s secondary school and made any necessary recommendations to support her to transition, i.e. electric wheelchair to support her with distance as Annie is currently awaiting a hip replacement and can fatigue quickly. The wheelchair will also allow her to adjust her height to the different desks in different classrooms.
The Special Educational Needs (SEN) teacher has attended relevant meetings and will ensure there is a contingency plan in place, should the classroom assistant not be available. The SEN is responsible for the necessary assessments including risk assessments for Annie attending secondary school.
All the best Annie, let us know how you get on in your first few days!
