Evelyn was born on 25th April 2020 in Cairo, Egypt, where we were living and working at the time. She was blue and not breathing. Evelyn had suffered from something called 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 Egpyt and then back in the UK, it became clear that Evelyn had gone a significant amount of time without oxygen at birth. 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, and dysphagia so she is tube fed, she is visually impaired and has severe to profound 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 with Evelyn alongside her NHS appointments. This includes online OT with Smile Therapy for Kids in Canada, who we would love to take Evelyn to for an intensive one day. We also do private physiotherapy, DMI, ABM, movement therapy, reflex integration, and oxygen 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 seek funding elsewhere 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