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Aida Palfrey is a smiling, spirited teenager who ‘oozes charisma’ and loves spending time at Milton.
The 15-year-old has CDKL5 Deficiency Disorder (CDD) and been receiving care from East Anglia’s Children’s Hospices (EACH) since January.
The rare condition affects her motor skills, vision and speech, and she also has a drug-resistant epilepsy that causes severe, extreme seizures.
Despite these challenges, dad Jamie says his daughter is a ray of light and positivity – rarely letting anything get the better of her.
“In terms of her personality, Aida oozes charisma and is the happiest girl in the world,” he said.
“Nothing bugs or bothers her, and she doesn’t complain about anything. She smiles all the time, and we’re extremely proud of her.
“She gets tired easily and can have an attitude, but it’s good to see that spirit and side of her personality shine through.
“She’s also non-verbal but communicates through her face, and that’s when we know she’s angry or unhappy.
“She tells us in her own way, but those occasions are few and far between.”
Aida was three when she was diagnosed with CDD.
Her condition is so rare that the test used to diagnose her had not been available three years previously, when she was born in 2010.
“It’s still very much in the early stages of discovery,” said Jamie.
“It’s not considered a regressive condition, but unfortunately that doesn’t seem to be the case with Aida. She appears to have gone backwards.
“For instance, she used to walk around completely unaided, but can’t do that now. She can take a few steps with help but not for long because she doesn’t have the stability or capacity.
“She also has dysphagia, so now has to be fed through a tube.”
Aida and her family were referred to EACH late last year, and she has already had three successful weekend breaks at Milton.
“We’re late to the party, so to speak,” said Jamie.
“We’ve always been a family that have just got on with it, and we had no idea of the support that was out there.
“Then we were told about the hospice, and I had nothing but positive thoughts because I spent ten years working in adult palliative care, as head of catering at St Joseph’s in Hackney.
“I know what hospices offer and appreciate it’s not just about death and dying. It’s about embracing life and doing good things for communities.
“If you’ve never dealt with hospices before, the obvious thoughts spring to mind.
“However, I know they’re about so much more and think they’re great institutions and organisations.”
Jamie says the care and support has more than lived up to his positive expectations.
Aida particularly loves spending time in the sensory room, having hand massages, doing arts and crafts and enjoying music therapy.
She will also hopefully have her first taste of hydrotherapy later this year.
“The team are absolutely awesome, amazing people, and Aida loves her time at Milton,” said Jamie, 48.
“We’ve noticed that when we get there, she starts scrunching her hands, and that’s called stereotypies.
“That’s our way of knowing she’s excited.”
Aida’s weekends also provide welcome respite for Jamie and wife Pelin.
They find it hard to leave their daughter with anyone else because of the severity of her seizures.
On a good day or night, she might have one or two. However, on a bad one, that tally can worryingly leap to 15.
“They can also go on for as long as 20 minutes,” added Jamie.
“They’re extreme and can be violent, and it can take a long time for her to recover and come out of that preictal state.
“Also, if she’s just had a feed, she also has a tendency to vomit. That brings an element of severe risk, especially if it’s at night.
“So, there aren’t many people we’d trust to care for her, and it wouldn’t be fair to put that level of responsibility on someone that isn’t trained.
“The fact we’ve now got EACH, and can rely on its expert nursing care to look after her, is amazing.”
Jamie says he and Pelin are positive, spirited people – traits that appear to have rubbed off on Aida.
He also believes that mindset is reflected by the mantra of EACH.
“My wife and I are a great team. It’s come with practice, over many years,” he said.
“We have bad moments, obviously, but these are the cards we’ve been dealt, and we tend not to dwell on things.
“We’re positive people and like to crack on and make the best of life.
“I guess that’s another thing relating back to EACH, isn’t it?
“It’s that feeling of creating memories – a huge part of what the hospice is all about.
“It’s about having fun, living life to the full and creating memories.
“That aligns with our mantra in life and hopefully resonates within Aida.”
