Mila’s story

Mila has Spastic Quadriplegic Cerebral Palsy with severe dystonia. Mila has silent aspiration and is fed all nutrition via a gastrostomy. When she becomes ill (she is prone to chest infections) the infection can cause a dystonic storm. This can create respiratory distress due to the strength of the spasms in her neck.

We have been waiting for 2 years to be approved for adaptions in our house. We currently have nothing and as a result we have been assessed and told not to bathe her at home as we don’t have the facilities. When well enough I take Mila to school and bathe her there. Or to the local pool where they have a “changing place” facility.

Mila favourite thing in the world is hydro-therapy as this has a relaxing effect on her spasms and relieves her body from all the contortions it is forced into on a daily basis. When Mila is well enough, she attends school and has access to a hydro pool once a week. Unfortunately, Mila cannot quite cope with the temperature of our local swimming pool.

My little girl and I have had the most amazing time at your cabin in Ribblesdale. Due to Mila’s complex needs and ongoing unresolved medical issues we struggle to go too far from home as our local hospital knows her best and we are quite regular guests at their children’s ward (shout out to Airedale NHS!).

We spent time relaxing in the lovely cabin, enjoyed strolls to the cafe to enjoy their delicious food and open fire (great customer service here and made to feel really welcome). Splashed about in the hot tub, and cuddles on the sofas!

Our house is quite small, and we struggle to entertain guests around her equipment. Whilst at the cabin we had our friends come and visit us, we went for walks, ate at the cafe and played in the hot tub. The open plan living room and kitchen meant that everyone could enjoy their time together happily and safely.

Mila doesn’t sleep well due to pain and discomfort and we’re often “up and about” at all hours. The layout of the cabin is perfect for this as we simply made a big bed out of both sofas and cuddled up together (me with a cup of tea of course!).