A wonderful weekend at Wilmington Priory.
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Louis was the first XP patient in the UK to receive cochlear implants.
Louis is 17 and he has XP type D. He was diagnosed with XP aged 2 and within a year of his diagnosis it was picked up through his delayed speech and development that he had mild hearing loss. As with any degenerative condition the loss progressed over time, and by the time Louis was 14 he was classed as being profoundly deaf. Hearing aids were no longer helping and Louis was within the thresholds to be considered for cochlear implants in both ears. This was a huge decision for the family as there were no other UK XP patients with this level of hearing loss or with cochlear implants that we could relate to or discuss the experiences with. However, after lots of meetings with the professionals and with as much information as they could digest they decided, with Louis, to go for it. Louis was booked into have his operation in 2019, but due to covid this was postponed to early 2021. The family were as prepared as they could be for this, including having a talking device for Louis, as it can take weeks, or even months to regain hearing and speech. Against many odds Louis picked up hearing and regained his speech incredibly quickly, everyone was so proud of him and pleased with how successful this had been for him. Three years on and Louis hearing is still being supported well through wearing his cochlears. This doesn’t replace hearing, and with cognitive delays and a learning disability things aren't always easy for Louis. Last year Louis was successful in being given a hearing dog through the Hearing Dogs for Deaf People charity. Three years since applying Harper was worth the wait, she helps Louis to hear sounds and alerts him to dangers, she is also a comforting companion, supporting his mental health and wellbeing. |
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