Thank you for taking the time to read about Lauren's journey, which has been a long and complicated one.  Lauren is one of four children, when Lauren was 8 months old she was behind on her milestones.  She wouldn't crawl nor walk and we had a lot of medical issues involving Gastro and growth.As Lauren got older her symptoms worsened, she would cry every where she had to walk, struggled at nursery and all was put down to simply growing pains and being a little underweight.We made a bold move in 2010 and moved to the coast from London and had to therefore change hospital.She was diagnosis with multiple complex issues and currently see's 7 clinic's monthly.In 2015 her symptoms became increasingly more painful and frustrating.  Lauren struggles to stay awake at the end of the day, she is often swollen and inflamed, she was also having chest pains and collapsing daily.  She is in pain daily and struggles to even brush her own hair. After a short stay at GOSH she entered a rehabilitation program that made her worse and she then started experiencing daily subluxltions, this has been the worst type of pain imaginable for her.We believed Lauren was more than simple "hypermobile and growing", we also believed all these symptoms were linked, we were extremely worried about the collapsing.  I had to leave my employment as Lauren is requiring more and more assistance at home and we were nervous when she would be unsupervised or in charge of younger siblings. I help with daily physio, showering and support.After not receiving much advice or support for Lauren via her current team we felt we had no option but to seek private advice. Early this year we were extremely blessed to see Professor Grahame at his Harley street clinic, however that in turn has opened a rather large can of worms and spread out into numerous clinics. I must admit we was expecting to only have one or two appointments however, due to their findings we are requiring more and more tests and appointments.Lauren diagnosis's are: Ehlers-Danlos SyndromeHypermobility Spectrum DisorderPostural Orthostatic Tachycardia SyndromesProlapse of both Mitral heart valvesIncontinence IssuesGastro IssuesOrthotic IssuesAutonomic SymptomsExtreme Anxiety and mild depressionChronic FatigueAs well as multiple mini conditionsLauren takes 19 tablets per day as well as liquid medicines and mixtures, she completes physiotherapy three times a day.Knowing her diagnosis have been a huge weight of our minds, we now know why these pains and swellings are happening, why her body want's to shut down, why after x amount of walking she simply can not go any further, why her heart feels the way it does. We also have accepted that this will sadly be lifelong, we can help with making things easier, with physiotherapy, emotional support, splints and lots of decaf tea.I was a little apprehensive about starting this fund and setting an amount, however after a chat today I feel this is a route we now need to go down..We are currently taking a new medication which has stopped Lauren's daily collapses, however the tablets are currently costing us £145 per month. Every time we attend her London appointments we are charged £350 -450 not including the food and travel.  Lauren now has to have a full bone scan, this is £850.We are supplying our own medical equipment and support's for Lauren as the local team will not provide them for her.We have even had to seek mental health support for her ourselves as her team say they are unable to provide this for her.We have so far pushed through with help from family and friends, however sadly we are struggling.  We have approx 5 more private appointments in the next 6 months, I need to arrange for private tests as well as the monthly private prescription.   The current team have some concern areas and wish to carry out further testing. We know that this will cost more than the amount we have selected as our target, however any help would be greatly received. We are hoping and praying that once all of her tests results are back we can hand her over from private to her local NHS although this is not to be expected until March 2020.We honestly feel we are now at the point that we need to ask for all the help and advice we can get.If anyone is able to assist with this, whether that is financially or knowledge wise it would be hugely appreciated.Please feel free to contact me if you require any further information, you may even have some recommendations for local support networks that could possibly help us? I will take all the help and advice we can get.Thank you so much for taking the time to read about Lauren.https://www.ehlers-danlos.org/what-is-eds/https://www.ehlers-danlos.com/what-is-hsd/https://www.potsuk.orgAll of these conditions are sadly under funded and under supported in local hospitals.