Ana-Lily Rose is a 9 year old girl with a severe physical disability and complex needs. She has a very rare, life-limiting genetic condition, effecting her UBA5 gene. She is completely dependent on us for all her needs. As she gets older and bigger, caring for her on a daily basis is becoming ever more challenging. Each piece of equipment for her sitting, standing & other positional needs gets bigger too. The family home has run out of space!
Ana-Lily’s home is in need of major adaptations in order to meet her needs in a more manageable way. She needs a new bedroom, wet room, hoist, through floor lift, more living space and lots of storage for her equipment and medical supplies!
Ana-Lily spent 6 months in hospital (August 2019-January 2020) following a life threatening illness. She is still recovering but has made amazing progress so far. We are blessed to see her smile again and hear her famous giggles!
They say it takes a whole village to raise a child! I hope you will become part of our village! Thank you ?❤️
Loving her physio session (July 2019).
Ana-Lily just before surgery in August 2019.
Having a much needed nap in hospital, Christmas 2019.
Christmas Day, Children's Hospice, 2019.
April 2020, smiles are back!
Ana-Lily has a wonderful personality and attitude towards life. In spite of all the things that she can't do, she has an amazing ability to brighten up every room she enters with her infectious smile and famous giggles!
Ana-Lily loves singing and music! She enjoys watching musical films, especially 'Annie'. It has to be the original movie from 1982!
She enjoys getting out and about. Favourite places are shopping centres with lots to see and hear or the park, if the outdoor conditions are just right! She tries her best to engage in lots of activities like arts and crafts, cookery or just some fun, messy play!
She attends a special school with lots of therapy input. Her focus at the moment is on making progress using her eye-gaze system. We are hoping that it will be the tool she will use in order to communicate all her needs more effectively. She keeps both mummy and daddy very busy when using it.
She has been through a lot of difficult times in her short life, particularly over this last year. There have been lots of changes for her, for example, going from being completely orally fed to having to use a gastrostomy tube for all of her feeding and medication. She has also lost some physical skills that she would have had previously. However, in spite of this, her character and personality shine through even more strongly. She is our joy and happiness!
We are trying to raise £40, 000 towards the cost of the work for Ana-Lily.
How will this change our lives?
Caring for Ana-Lily is very physically challenging for us. Ana-Lily's needs are complex and she needs highly specialised equipment and procedures in order to live her life. These adaptations will make looking after her and managing her needs much easier. They will also make Ana-Lily's experience of life much more positive.
How long will the project take?
The building work will take around 6 months to complete.