We are fundraising on the behalf of our daughter Hayleigh. Hayleigh is a young girl in her 20’s who is diagnosed with 15 complex chronic illness and disability. Her major journey with health started from the age of 15 and has been progressively getting worse and more dangerous. Diagnosed with Ehlers Danlos Syndrome (both Vascular variant and Hypermobile), MCAS, POTS, Dysautonomia, POTS, Gastroparesis, Intestinal dysmotility, Severe nutcracker syndrome, Severe SMAS, MALS, PIJ compression, Fibromyalgia, FND, ME/CFS and many more.

Hayleigh drastically needs a lot of nutritional help and devices to keep her alive, unfortunately though we are spending a lot of time trying to find someone to help and someone to treat her extremely complicated situation as everyone local has turned her away. Over the last 4 years Hayleigh has lost 14.5kg leaving her at the current weight of 31.3kg even with NGT feeding for 3 of those years, she is deteriorating rapidly, and we are desperate to get her the help she needs. Between Gastroparesis, Intestinal dysmotility, severe nutcracker, severe SMAS and MALS she cannot absorb nutrition adequately, not to mention she can only stomach less then a toddler on a daily basis.

The travel and medical expenses have added up extremely over the years and whilst we are working so hard to get help this is a definite struggle. Currently Hayleigh has no quality of life and spends all her days at home, mainly limited to her bed. Living in excruciating pain daily throughout her entire body due to her many conditions, with some of her diagnosis being compared to the pain of pancreatic cancer when eating or drinking.

She not only has an NG tube feeding but needs to use equipment like a shower chair, walker and wheelchair. Everything hangs in the balance of us being able to get her the proper nutrition access she needs. This includes both a PEG, PEJ and the possibility of TPN. These are all extremely expensive and include procedures that are not pleasant, but she is desperate to get back to some form of nutritional stability and is terrified for her life, as are we, her parents. We are at a point of sheer desperation.

Any money raised will go towards finding Hayleigh a new specialised nutrition team, surgeries, procedures, different forms of nutrition access, cost of any travel and accommodation. Now there has been more damage to her gut function due to her vascular compressions and lack of help/ adequate nutrition access.

Hayleigh is a true warrior fighting as hard as possible every step of the way, with the knowledge of how dangerous her situation is, being able to stay alive is her aim right now. She has come to accept life will never be without health issues, complications, pain, mobility struggles, seizures, extreme exhaustion and nutritional issues. However, being able to gain access to this treatment and devices will be able to give her some hope and spark back in her life. To allow her to enjoy life as 20 +-year-olds should, instead of fighting for her life every day.

We understand and appreciate things are tough for everyone right now, but we are hoping to reach as many people as possible. Every single dollar helps us in everyway in the fight for help and nutritional access for Hayleigh. Please if you feel within your heart, we ask that you share our daughters fight to those you know, any little amount of money or awareness is massively appreciated.

Thankyou from the bottom of our hearts!