Hi, my name is Stella and both her daddy George and I are trying to raise enough funds to take our little girl Penelope to the NAPA Centre in America for intensive therapy that will hopefully help her work towards a better quality of life. She has a very rare chromosome disorder called 8p inverted duplication and deletion syndrome. As a result of this Penelope suffers from hypotonia (weak muscles), a developmental delay, a learning disability, speech delay or absence, she has structural anomalies of the brain and could later develop heart problems, spinal curvature, seizures...the list goes on. As it is so rare the doctors cannot give us a prognosis so we just shower her in love and therapy and take each day as it comes!

Penelope is now 3 years old and cannot transition from lying down to sitting up, she cannot crawl, cannot walk and gets tired very quickly. She is cognitively more advanced than physically, so can get very upset and frustrated when watching other children run around and play. This is heart breaking as we hope we can do enough to change things for her so that she never feels left out. We manage about 30 minutes a day in a standing frame. She cannot feed herself, she is non verbal so she cannot tell us when she's thirsty, hungry or in pain. She has part of her brain missing known as the corpus callosum so she suffers from sensory issues, and she finds it so hard to sleep from the lack of natural melatonin production so can wake up to 12 times a night.

Above all this though she is a bright, happy, loving, sociable little girl who just wants to be able to play like her friends and talk to everyone she meets, she is very stubborn so I am determined a push like the therapy available at the NAPA centre could be all she needs to get moving and if not, at least we know we tried and given her every opportunity possible to better her quality of life.

Before Penelope I had been working full time as a Creative Services Manager, as I am now Penelope's full time carer as well as her mother it's been impossible to return to work. It's tough surviving off of one salary. She has Speech & Language therapy once a week, Occuptional therapy once a week, Physiotherapy once a week, we attend Small Steps which is a charity run therapy group once a week and there is always an appointment to see a paediatrician or other healthcare professional! I just cannot hand any of these appointments over to someone else, and as her mother I want to be there for her every single step of the way, which is why I've decided to set up a crowd funding page in the hope that together we can raise the money we need.

Breakdown of target:

7K for 3 weeks therapy, 2K for flights, 3K for accommodation & car hire, Just giving will take £774 for fees and processing.

Therapy involved:

2 hours a day in a Neurosuit, which frames the body providing support and resistance simultaneously. It improves and changes proprioception (pressure from joints, ligaments, muscles), reduces undesired reflexes, facilitates proper movement and provides additional weight bearing which also provides strong feedback to the brain which then helps create new patterns of movement.

1 hour a day in Cuevas MEDEK Exercise, physical manipulation to stretch out tight muscles and train muscles in groups. These manipulations are said to lead the child to gain greater control over her trunk which are necessary for performing basic gross motor activities such as sitting, standing, walking etc. Floor exercises are also involved and repeated until the reaction of the brain becomes automatic.

1 hour a day of Speech therapy, addressing delays, disorders in expressive/receptive language, articulation, oral motor dysfunction, apraxia of speech, feeding, swallowing and cognitive skills.

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