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
- Health and medical
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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.
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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Feb 16, 2018
I wish you every success in raising the much needed funds for Destiny.
Feb 3, 2018
Hey destiny this is from my grandma ❤
Jan 31, 2018
Thinking of you and wishing you all the best love judy and Martyn Greenxx
Jan 31, 2018
Jan 30, 2018
Hope all goes well mate.
Dec 27, 2017
So sorry to hear. Hope this helps xx
Dec 22, 2017
Upon hearing of the failed EBay auction Marshal Sequeria, a customer of Colin Ferns Ltd, not only offered to make up the shortfall but exceeded it!