8%
£3,190raised of £38,000 target by 83 supporters

Weʼre raising £38,000 to Raise funds for my daughters operation which will help 15 years of chronic intestinal pain, allow her to eat food again and save her life

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Story

Thank you for looking at this page. This is my daughter Destiny. Destiny was first diagnosed with stomach ulcers at the age of 5 years old and has been in chronic pain for 15 years. She has been in and out of hospital and A&E most of her life.

Last year she was diagnosed with EDS (too much cologen meaning her internal organs including arteries have no structural strength), gastroparesis (stomach not working), continuous vomiting, POTS (fainting when she stands up). This year 2017 has been the worst with severe weight loss as she can no longer eat orally.

Destiny had a nasal gastric feeding tube placed which failed within 1 month. Destiny then had a nasal jejunum tube placed, which worked for a short time so was replaced for a more permanent direct jejunum feeding tube which has now failed.

After much research and a consultation with a German specialist Destiny has been further diagnosed with MALS and SMA syndrome, also known as Wilkie syndrome. The condition is so rare, there are only about 500 documented cases worldwide. Basically her blood supply to her lower half of her body, espically her intestines are no longer receiving the blood supply they require. The blood supply to her legs are just as bad, eventually Destiny will need a wheelchair if she doesn’t get the surgery.

There is an invasive operation that Destiny can have to repair this problem and this is why she needs these funds.

Destiny is the most hardworking, friendly 19 year old girl you could meet. Even during long Hospital stays this year Destiny has managed to finish her college course in Forensic Science achieving the highest grades possible. Destiny has secured a place at University to read Law but has had to defer it for a year due to this terrible illness. As a single Father I could not be prouder of my daughter but seeing Destiny decline steadily in health is soul destroying.

I have had to give up work to look after Destiny as she needs continuous help with her many medicines, feed and the side affects they give her. It is horrible to have to give your child, daughter, medicines that they give cancer patients. Destiny cannot even have strong pain killers like Morphine as they cause more problems.

Imagine not being able to eat then imagine not being able to drink without vomiting, imagine that vomit feeling and the vomit burn in your throat and the taste of bile in your mouth. Now imagine that throughout the day. Imagine getting up from bed or a chair and then passing out but not knowing when it may happen. Imagine having chronic severe pain, tiredness, brainfog, fatigue. Imagine having to time everything around a feeding pump and medicines with their frequent uses. Imagine not being able to receive pain medication that most of us take for granted. Imagine being fed via a tube knowing that the medical feed is not being absorbed due to lack of blood getting to the intestines. Imagine having to live that day in day out - Destiny is living it.

Destiny has such a potential future ahead of her but at every turn it has been taken away, this operation would not only give her a chance of a normal life but a end to chronic pain. - Thank you for reading this.

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Konstantin

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    1 month ago

    Konstantin started crowdfunding

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    Supporters

    83

    • Andrea Langfritz

      Andrea Langfritz

      Dec 7, 2017

      Our very best wishes for Destiny.Debbie and Oliver keep us informed.

      £50.00

    • India matthews

      India matthews

      Dec 7, 2017

      I remember being at oakfield school with you. You’re a trooper, don’t lose hope ❤️

      £5.00

    • Jean Marshall

      Jean Marshall

      Dec 6, 2017

      Oliver and Deb, I hope your niece improves now she's had this treatment, what a brave girl particularly managing all this whilst studying too.

      £10.00

    • Tom Ansell

      Tom Ansell

      Dec 6, 2017

      £7.00

    • Bobbie Ross

      Bobbie Ross

      Dec 6, 2017

      £10.00

    • Nigel Hale

      Nigel Hale

      Dec 4, 2017

      I hope Destiny gets the chance she deserves

      £10.00

    • roger swift

      roger swift

      Dec 4, 2017

      Good luck and best wishes to a brave young girl ....

    About the fundraiser
    Konstantin

    Konstantin

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