Enya's quilt    (Quilt Open)

Theme details

Disney Princesses - Moana is her favourite

Child Interests

Enya is a very girly girl who loves anything pink and purple. She absolutely loves Disney Princesses, with Moana being her favourite. She especially loves watching Moana and will happily watch it on repeat every day. Disney and her favourite colours are a big part of what makes her smile and helps bring comfort and enjoyment into her day.

Biography

Enya is a 13-year-old girl with complex additional needs and profound and multiple learning difficulties. Her journey with propionic acidemia began when she was just a few days old. At around three days old, she started showing signs including poor feeding and being extremely lethargic. By a week old, she began crying and becoming very unsettled, which was very unusual for her as she had previously been sleeping most of the time because of how lethargic she was. She was also being sick with bright yellow vomit. We took her to our local hospital, where she spent around a week while doctors tried to establish what was wrong. When more in-depth blood and genetic testing came back, Enya was diagnosed with propionic acidemia and transferred to Great Ormond Street Hospital. She spent four weeks in intensive care and then a further six weeks on the ward, where we learnt how to care for her and manage her condition. Enya remains under the care of Great Ormond Street Hospital because her genetic condition is extremely rare and requires specialist ongoing care.

Enya now has a number of complex needs, including propionic acidemia, cystic encephalomalacia, retinal dystrophy, global developmental delay, microcephaly, a movement disorder and epilepsy. She is non-verbal and fully dependent on adults for all aspects of her care. She uses a wheelchair and is unable to sit, stand or support her own weight without assistance. She has very limited trunk strength and low muscle tone, tight calves and very mobile hips. Enya is gastrostomy-fed and requires a high level of nursing and personal care, including support with feeds, medication, epilepsy, continence and her specialist diet. She requires constant adult supervision because she has no awareness of danger or falling and cannot protect herself if she loses her balance. Despite the significant challenges she faces, Enya is a happy, sensory-seeking girl who enjoys stimulation, movement and watching the world around her. She relies on the adults around her to keep her safe, comfortable and able to take part in everyday life.

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