Just4Children are wanting to raise funds for specialist medical and mobility equipment, and private therapies for Evelyn aged 4 from Newtonmore in Invernessshire.
Evelyn was born on 25th April 2020 in Cairo, Egypt, where we were living and working at the time. She was blue, not breathing and required resuscitation. Evelyn had suffered from something called grade 3 HIE (hypoxic, ischaemic encephalopathy). She was intubated for five days and in hospital for a total of 55 days before we could take her home.
As time went on in hospital, both in Egypt and then back in the UK, it became clear that Evelyn had gone a significant amount of time without oxygen at birth, with extensive damage to all areas of her brain. After a “normal” pregnancy and her being born full-term, we have no idea why or how she suffered such a severe injury.
Evelyn is diagnosed with quadriplegic cerebral palsy (affecting her whole body), dystonia, severe epilepsy including infantile spasms, dysphagia so she is tube fed, obstructive breathing, she is visually impaired and has sensorineural hearing loss. Evelyn also has obstructive sleep apnoea which means she often requires oxygen at night and due to the high tone in her limbs, both of her hips are now dislocated. This is a pretty extensive list of diagnoses and as time goes on and she grows, we are aware that things will change and new interventions will need to be put in place.
At present, we do a variety of private therapies and intensives, as Evelyn receives no therapy through the NHS. This includes online OT with Smile Therapy for Kids in Canada and three week intensives at NAPA UK in Harlow. We also do reflex integration and myofunctional orofacial therapy. We have also found that due to Evelyn’s complex needs, some equipment provided by the NHS isn’t supportive or comfortable enough for her, meaning we are having to fundraise for Just4Children to purchase these things.
We are so grateful for any support we receive on this journey, as you are helping make Evelyn’s life more enjoyable and accessible so that she can continue to have all the adventures in her life.
Thank you x
