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Stella Tikkirou raised £11,845 from 168 supporters

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Closed 08/09/2017

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£11,845raised of £12,000 target by 168 supporters

    Weʼve raised £11,845 to help our little girl go over to the NAPA Centre in America to receive therapy for her very rare chromosome disorder

    London, United Kingdom
    Funded on Friday, 8th September 2017

    What is crowdfunding?

    Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.

    The page owner is responsible for the distribution of funds raised.

    Story

    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.

    Thank you for taking the time to visit and read our page X

    Updates

    9

    • Stella Tikkirou2 years ago
      Stella Tikkirou

      Stella Tikkirou

      2 years ago
      Update from the Page owner

      We did it! We have raised enough money to get Penelope to America for therapy and we couldn't have done it without every single one of you! We are booked in for the intensive therapy in the New Year and we will look forward to sharing updates on Penelope's progress with you all then. Lots of thanks and lots of love from us all X

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    • Stella Tikkirou2 years ago
      Stella Tikkirou

      Stella Tikkirou

      2 years ago

      As our crowdfunding page draws to a close I would like to thank you all for being by our sides for this part of our journey. We have been given the next available dates for therapy in the New Year and we have already secured Penelope's place with a deposit. We will of course keep all you beautiful generous beings updated on Penelope's progress but until then, thanking you all from the bottom of our hearts. Lots of love Stella, George & Penelope xxx

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    • Stella Tikkirou2 years ago
      Stella Tikkirou

      Stella Tikkirou

      2 years ago

      Hello everyone!! We just wanted to say another thank you to everyone! The countdown has begun, 8 days to go to reach our target! But we really are doing well, 83% of the way there and we couldn't have got this far without any of you. Thank you ALL soooo much xx

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    • Stella Tikkirou2 years ago
      Stella Tikkirou

      Stella Tikkirou

      2 years ago

      To all our generous donators, we just wanted to say another HUGE thank you - we really are so grateful and thank you all from the bottom of our hearts and for making what seemed like the impossible possible. We are so close, 82% of the way there so please keep sharing far and wide!! Lot of love from Penelope and her mummy and daddy xxx

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    2 years ago

    Stella Tikkirou started crowdfunding

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    Page last updated on: 9/8/2017 21.02

    Supporters

    168

    • Christine Friend No 3 (I think too!)

      Christine Friend No 3 (I think too!)

      Sep 8, 2017

      I really hope this helps your little girl. She looks beautiful.

      £30.00

    • GP Associates

      GP Associates

      Sep 8, 2017

      Good luck!

      £50.00

    • Despina Drakaki

      Despina Drakaki

      Sep 6, 2017

      I wish your little princess be very well soon! I pray for her <3

      £20.00

    • Ella Norton

      Ella Norton

      Sep 6, 2017

      Best of luck with the therapy Stella x

      £30.00

    • Loukia Stavrou

      Loukia Stavrou

      Sep 6, 2017

      God bless good luck xx

      £30.00

    • Judith Netscher

      Judith Netscher

      Sep 6, 2017

      Wishing you and the lovely Penelope the very best of luck with this treatment. Hope it results in many more of those beautiful smiles.

      £100.00

    • Raju Lall

      Raju Lall

      Sep 3, 2017

      These are cash donations from my work and cricket team, hopefully collect some more funds next week.

      £95.00

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    About Crowdfunding
    About the fundraiser
    Stella Tikkirou

    Stella Tikkirou

    London, United Kingdom

    Hi our names are Stella and George - mummy and daddy to a gorgeous little girl called Penelope working towards raising enough money to take her over to America for some intensive therapy to help her walk.

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