Help Issy get back on her feet

I’m fundraising to help pay for my daughter’s urgent rehabilitation.

Issy is in the biggest fight of her life. She has quadriplegic cerebral palsy (CP), and due to changes of management, her specialist SEND school is failing her holistically. All efforts to communicate with the school have got nowhere.

Despite this, the LA has issued a final Education, Health and Care Plan (EHCP) that locks her into that school for another year. She hasn’t had her annual review yet. An urgent appeal has been lodged, but may take as long, due to a backlog of cases.

The EHCP is a legally binding document that outlines what specialist therapies Issy must have each year and is reviewed accordingly, but is unfit for purpose. It hasn’t shown clear physiotherapy or speech and language therapy (SALT) input for two years.

Issy is showing severe regressions in motor skills across the board, particularly standing, walking, sitting-to-standing transfers, and using her AAC device to communicate, and is quite passive. She no longer initiates picking up or holding objects or what she wants to do by gesturing. Her signing has plateaued completely.

More seriously, she is at increased risk of musculoskeletal deformities (including scoliosis) that may cause her pain and/or limit future mobility, aggravated by teenage growth spurts, and is being monitored closely by an orthopaedic consultant.

She needs a 24-hour postural management programme to help keep her bones aligned, and is booked for an early postural positioning clinic next month. (Issy started attending the clinic annually three years ago. This one is three months early.)

This is deeply concerning for all of us. At age eight Issy was self-feeding, rising to sitting in her bed, going up and down corridors in her walker, and even learning to climb stairs. Now she is doing none of those things, and her school physio has cut her hours and effectively consigned her to her wheelchair. A private physio commissioned to assess her for a EHCP report is recommending an urgent transfer to Treloar’s residential school and college in Hampshire, which has an outstanding transdisciplinary therapy team, and takes students up to age 25.

Issy is not getting a suitable academic education at school either. I cannot keep her at home full-time, as we don’t have the space for her walker, stander and power-chair, and we are waiting for a housing transfer.

Our landlord has found a lovely house with a ground-floor side extension for Issy, but until a Disabled Facilities Grant is in place for adaptations there is no timescale for us to move. I am having to source alternative therapies outside school instead.

I have booked a four-day intensive course of Conductive Education and Music Therapy in London next week, which we are really looking forward to. I have been very lucky to get this fantastic course at a discount.

Conductive Education is a holistic programme that teaches children with CP to consciously and specifically perform actions that non-disabled children learn by rote, day-to-day, such as getting dressed, using cutlery, and opening/closing doors, while Music Therapy aims to enable Issy to communicate her emotions. This will be helpful as she has been expressing her frustrations at the state of her education almost daily.

I am keen to book more intensive Conductive Education courses, and a specialist paediatric physiotherapist for weekly sessions lasting 60-90 minutes at £65 a hour. But the costs are beyond what I can afford as a single parent giving up time for my beautiful daughter, and the therapies must be in place until Issy is able to transfer to her new school to avoid her losing vital independence and life skills - for good.

I am asking for a total of £13,000 to cover weekly private physio sessions, Conductive Education and Music Therapy courses, and accessible London travel/accommodation over the next 12 months.

Please note that this total may change depending on clinical progress. CP is an evolving disability, and needs flexible transdisciplinary therapies in order to stay manageable. Issy will always need a good workout! I am presently exploring SALT options as her AAC device is ill-equipped for her needs.