How home care supports Rett Syndrome: Natalia and Danielle’s story
Published: Friday 4th February 2022
Home / News / How home care supports Rett Syndrome: Natalia and Danielle’s story
Natalia, a home care assistant with Agincare, began providing support to Danielle two years ago, and ever since the pair have developed a real bond of trust. Because of this, Natalia is eager to explain how home care supports Rett Syndrome.
Born with Rett Syndrome, Danielle is one of a small number of women with the rare condition, and knowing her has set Natalia on a journey of education and determination, all in the name of supporting people like Danielle.
Caring from the start
Natalia started in social care when she was 18, shadowing professionals, after a part-time cleaning job at a nursery. Her journey, however, began long before this – for her it was in the family. Natalia’s grandmother supported adults with learning disabilities, and sometimes Natalia would go to work with her.
Natalia has been working at Agincare for 3 years, and known Danielle for two of those. Warm, fun-loving with an infectious smile, Danielle is 25, and looks to her family and Agincare to support her. Natalia explains;
When my office first told me about Danielle and that they thought I’d be a perfect fit for her, I read her file. I’d never heard of Rett Syndrome before, and I went home and immediately started learning. I watched documentaries, read up on the NHS information, I just wanted to do everything I could to be a better carer for her.
I found out that it affects 1 in 12,000 girls a year. It is a rare genetic disorder, a neurological condition affecting brain development and causing severe mental and physical disabilities. Sadly, it’s lifelong and there is no cure. Danielle will always be reliant on her mum, and on having a care team around her.
Natalia dedicated herself to this new learning curve, going out of her way to think about life from Danielle’s perspective.
She learned that with Rett Syndrome, Danielle was born a healthy baby, but that regression takes place between the ages of 6-18 months. Danielle developed as most do, walking and saying first words. At age 3, she started losing her speech and began hand-wringing, a common symptom. Eventually she started losing her ability to climb stairs, struggling with distance and depth. Natalia and her team work around this, however;
Now she can walk with assistance. She walks directly on her tiptoes and has shoes made specially for her. She uses a wheelchair mostly, and to keep up her mobility, us care workers walk with her up and down the house for 15 minutes on every hour.
Home care supports Rett Syndrome
Since meeting her for the first time, Natalia has consistently been her care worker, discounting a pause in services at the start of the pandemic. Now that support has resumed with our safety protocols, it’s a relief to everyone to welcome additional care back into the home. It’s clear when speaking to Natalia just how important Danielle is, and how much they value their time together.
“We definitely have a good relationship,” Natalia says, “I really adore her.”
Danielle is very sweet-natured; I love our time together. She needs assistance with feeding and personal care, and her favourite things are musicals, sensory videos, bubbles, balloons and light displays. She loves holding hands, too. She’ll snuggle with people on the sofa, and loves going out to the pub and restaurant.
Help where and when it counts
Sometimes Danielle will get upset and frustrated, and the more upset she becomes, the more she hand-wrings. Natalia knows her well, and knows that holding her hands and talking to her really helps at times like this.
The bond we have is so important because I can interpret what’s bothering her, and know how to soothe her. More often than not she’s a really happy girl and she’ll have a giggle if there’s something funny on the TV. You might just be having a conversation with her mum, and she’ll just start giggling, she’s got the best smile. I chat to her all the time, that I find very easy. When she smiles and snuggles up and giggles, that makes everything so worth it.
The bond of trust nurtured by Natalia is unmistakable, and as a result, the pair are able to find real bliss in the small things in life. Now, they enjoy nail painting and shampoo pamper sessions, and Natalia has found that Danielle loves when she reads to her, especially tactile books that Danielle can interact with.
As for Danielle’s mother, who was doing everything on her own only up until two years ago – now she has home care.
Having the home care assistants is a big help to myself and to Danielle. The carers who come in are very reliable and really go above and beyond to provide care and support through a very small team of 3.
– Danielle’s Mother
This is why our care matching process is so careful. Natalia is always there when needed, and goes on special outings with Danielle and her mum. Each person feels the value of this, and knows that trust wasn’t mislaid.
Knowing I’m trusted… that’s a great feeling.
Natalia is hopeful for the future, hoping to learn to drive soon, which will enable her to take Danielle out on trips. “I’d love to take her to the beach on a really sunny day,” she says. May there be many more sunny days for this pair!
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