Dani's Journey

Hi there my names Danielle and im 29year old living with a rare and life-limiting genetic illness called Ehlers-Danlos Syndrome which has progesssily gotten worse over the past 15 years. In the past 5 years my health has taken a turn for the worst and I am now in intestinal failure. I'm now totally reliant IV nutrition called Total Parental Nutrition which means I’m fed via my heart through a central line called a Hickman. I have a surgical feeding tube for all my medication. My mobility has declined over the past 5 years and I am now wheelchair bound. I have been encouraged by friends to set up this go fund me to raise money to get my wheelchair fixed as it recently broke meaning I am unable to get about safely.

Ehlers-Danlos Syndrome is a rare genetic disorder which effect the collegan, collegen make up 70% of the body therefore it is a multi-sytem disorder. As a result of my EDS I also have the following condition: Postural Tachycardia Syndrome, Gastroparesis, Slow Transit Colon, Intestinal Failure, Polyeystic Ovary Syndrome, Raynauds Phenomenal, Auditory Processing Disorder, Mast Cell Activation Syndrome, Chronic Fatigue syndrome, Neurogenic Bladder, Bladder Retention, Chronic Pain, Functional Neurological Disorder, Seizures and a Calcified Vein in my right Kidney. 

Unfortunately there is no cure for EDS or any of the other conditions I suffer with we are only able to manage my symptoms.

Currently I am hospialized due to my sever gastric issues (Gastroparesis, slow Transit Colon, and Intestinal Failure) putting it simply I can not eat anything orally and rely on IV nutrition called TPN which is deliver to my blood stream via my Hickman central line. In the past 9 months I have spent 7 months admitted to my specialist hospital trying to get my health under control to give me a quality of life where I can begin trying to cross things off my bucket list while I can. TPN is a very risky treatment and I am a very high risk of sepsis when I started on TPN I was told they couldn’t predict how long I would have left to live because it would depend on infections and liver damaged caused by the TPN.

Any money raised by this go fund me will go towards specialist equipment I need such as repairing my wheelchair, specialist appointments and giving me the opportunity to cross things off my bucket list.

Thank you for taking the time to read my story, spread awareness and donate.