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Closed 15/07/2018

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£640raised of £600 target by 22 supporters

    Weʼve raised £640 to Support my friends and their daughter Martina, 1 year old, who has Angelman Syndrome

    Tockington, Bristol, UK
    Funded on Sunday, 15th July 2018

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    Story

    Martina was born in June 2016 and diagnosed Angelman Syndrome a year later, on her first birthday. I am going to run 700km from now til the end of Summer Term (14th July) and raise funds to support my friends and Martina.

    Angelman Syndrome is considered a rare disease, therefore, it is difficult to treat so therapy is needed. With this challenge, I want to help my friends, Miriam and David, with the treatment and raise awareness of rare diseases.

    See below the definition of Angelman Syndrome by NHS:

    Angelman syndrome is a genetic disorder that affects the nervous system and causes severe physical and intellectual disability.

    A person with Angelman syndrome will have a near-normal life expectancy, but needs looking after for the rest of their life.

    Characteristics of Angelman syndrome

    The typical characteristics of Angelman syndrome aren't usually apparent at birth.

    A child with Angelman syndrome will begin to show signs of delayed development at around 6-12 months, such as being unable to sit unsupported or make babbling noises.

    Later, they may not speak at all or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems.

    The movement of a child with Angelman syndrome will also be affected. They may have difficulty walking because of problems with balance and co-ordination (ataxia). Their arms may tremble or move jerkily, and their legs may be stiffer than normal.

    A number of distinctive behaviours are associated with Angelman syndrome. These include:

    frequent laughter and smiling, often with little stimulus

    being easily excitable, often flapping the hands

    being restless (hyperactive)

    having a short attention span

    problems sleeping and needing less sleep than other children

    a particular fascination with water

    By around two years of age, an abnormally small head which is flat at the back (microbrachycephaly) will be noticeable in some children with Angelman syndrome. Children with Angelman syndrome may also start to have seizures (fits) around this age.

    Other possible features of the syndrome include:

    tendency to stick the tongue out

    crossed eyes (strabismus)

    pale skin, and light-coloured hair and eyes in some children

    a wide mouth with widely spaced teeth

    a side-to-side curvature of the spine (scoliosis)

    walking with arms in the air

    Some young babies with Angelman syndrome may have problems feeding because they're unable to co-ordinate sucking and swallowing. In such cases, a high-calorie formula may be recommended to help the baby gain weight. Babies with Angelman syndrome may need to be treated for reflux.

    Updates

    3

    • Pablo Perez Fustero1 year ago
      Pablo Perez Fustero

      Pablo Perez Fustero

      1 year ago

      24 runs completed, 225km ran so far, 475km to go!!! That's a photo from yesterday's 14km run!!

      Update from the Page owner

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    • Pablo Perez Fustero1 year ago
      Pablo Perez Fustero

      Pablo Perez Fustero

      1 year ago

      121 km ran so far out of the 700km challenge. All managed in 13 runs! Thank you very much everyone for your donations. To find out more about my progress, visit my Strava profile: Pablo Perez THANK YOU

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    • Pablo Perez Fustero2 years ago
      Pablo Perez Fustero

      Pablo Perez Fustero

      2 years ago

      #martinaesmiangel challenge has started well!! First 4 runs this week and have run so far 28.8 km, so 671.2 km to go, hurray!!! Thank you for the first donations :)

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    2 years ago

    Pablo Perez Fustero started crowdfunding

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    Page last updated on: 7/9/2018 20.28

    Supporters

    22

    • Dan Sheppard

      Dan Sheppard

      Jul 9, 2018

      Well done Pablo 👌🏻

      £20.00

    • The Davis family

      The Davis family

      Jul 9, 2018

      Go Pablo.

      £20.00

    • Sarah Preston

      Sarah Preston

      Jul 9, 2018

      Well done Pablo. Xx the Prestons

      £60.00

    • Mayda Mapondera

      Mayda Mapondera

      Jul 9, 2018

      Such a good cause. Best wishes feom Melissa and family

      £30.00

    • The Leadbeater family

      The Leadbeater family

      Jul 9, 2018

      Great work Pablo, from Harrison, Finley, Joseph, Nina & Gary

      £20.00

    • Darren Gaulton

      Darren Gaulton

      Jul 9, 2018

      Great work Pablo

      £20.00

    • Palma Padron

      Palma Padron

      Jun 21, 2018

      Mis mejores deseos para Martina

      £50.00

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    About Crowdfunding
    About the fundraiser
    Pablo Perez Fustero

    Pablo Perez Fustero

    Tockington, Bristol, UK

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