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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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.
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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- 13 days ago
Konstantin13 days ago
Due to the severity of her health and the funds you have continued to donate we managed to secure a loan for an operation on her arterial compressions. After an 8 hour operation, which was meant to be 4 hours due to complications, she finally was on ICU. Apart from having to somehow pay the loan back, the post op scans showed that possibly 2 of the compressions have recollapsed and a new one has happened. We now have to wait and see if further surgery is required. Please carry on donating to help Destiny. - Thank you for your continued support.
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May 22, 2018
I hope this helps ...
May 20, 2018
May 16, 2018
Best wishes from Anne & Paul Delaloye
May 10, 2018
Hope you get better soon Thinking of you
May 8, 2018
Wishing you all the best with your fundraising endeavours.From all at Viewranks
Peter & Ingrid
May 8, 2018
Wishing you the best of luck with your fundraising endeavours.Best wishes,Peter & Ingrid
billy wild and all at Mixed Freight Services & Heathrow Rent A Truck
May 6, 2018
We are good friends with Howard Jones. So sorry to hear. Hope this helps and best wishes for Destiny