Chloe's Dream of Independence!
£5,700 of £10,000 goal
We need your help!
Chloe is 20 years old with complex life limiting and potentially life threatening health complications and very limited mobility.
This is because Chloe's health took a turn for the worst in April 2014 and this turned into a 7 month hospital stay that bought life changing health complications. During and after that time many health conditions were diagnosed, the main one being a genetic connective tissue disorder: Ehlers-Danlos Syndrome. Other diagnoses involved: Postural Tachycardia Syndrome + Severe Autonomic Dysfunction, Enteric Mastocytosis, Myenteric Plexitis + Mast Cell Activation Disorder, Addison's Disease, Gastroparesis + Intestinal Failure, Atonic Bladder Failure, Functional Neurological Disorder as well as Chronic Fatigue and Chronic pain (Fibromyalgia).
Chloe cannot eat or drink, and recieves all her nutrition and medication via a line into her heart and another into her small bowel. Chloe has no use of her legs (relying on a power wheelchair in order to move around and the support of others to transfer) and due the the nature of her health complications requires constant care. Because of the complexity of Chloe's needs her home is in no way suitable for her. Chloe currently has no showering facilities downstairs or an accessible toilet. When Chloe is accutely unwell/unresponsive it is very difficult for ambulance crews to get Chloe out of the family home due to the current layout, which wastes time Chloe could be receiving the medical attention she needs. Chloe can only access one room in her home (the family lounge), which has been turned into her total living space, but does not meet her needs.
Due to her Chronic illnesses, Chloe has had to live in hospital for a majority of the last year. In order to come home and stay at home, several adaptions have to be made to accommodate her. Chloe has a hospital bed, hoist, a full size fridge, oxygen concentrator, orthotic chair, commode, a metal trolley/surface area for aseptic preperations and her electric wheelchair as well as storage of her medical and feeding supplies. As you can imagine this takes up all of the space surrounding Chloe, leaving her with little room for anything else. It is really important adequate space can therefore be provided, this will also mean the family have a space to share each others company, sit around the dining table to play a game or watch a movie all together- things they haven't been able to do much of in the past year.
Unfortunately the family home is not suitable to be adapted, meaning the only solution is to transform the existing garage into a living space for Chloe; this means knocking down the original structure and creating a purpose built building with access that meets her needs. This space would include a bedroom/living space, wet room, storage space and a small kitchenette for medical purposes.
By creating this space we will be transforming Chloe’s life. She currently feels very poorly because of her medical situation and at 20, Chloe longs for her independence. Chloe's life has changed so drastically and there are many pieces of equiptment she will also need for the annex.
Despite all the battles Chloe faces she spends all her time supporting others who are facing similar situations to her own and reaching out to others so that she can share her knowledge and help others who are struggling to come to terms with aspects of their own illness/disability. Chloe runs an online support group for young people who are chronically unwell, which has over 350 members world wide. She feels that her own hard circumstances can be used positively to help other people and this is a true reflection of Chloe's positive outlook and kind nature. Chloe is also exctited to be creating some really positive idea's with charities and groups locally for a new project. Chloe is not someone that will wallow in self pity at the circumstances she faces, but instead will do all she can to embrace it and find ways to use her experiences to help others.
If you are able to help in any way to create change for Chloe and her family it is so appreciated! Many thanks x
Postural Orthostatic Tachycardia syndrome is an intolerance to being upright. Chloe faints regularly and her legs must be elevated. If Chloe does not have her legs elevated she experiences blood pooling in her feet and legs, which means her brain does not het the blood and oxygen it needs, causing her to pass out or have seizures. Chloe's seizures now come in clusters and affect her ability to breathe, a worrying complication.
Food/fluid is not pushed through Chloe’s digestive system effectively so eating or drinking causes severe stomach cramps and vomiting. Because of this she now having to be fed special artificial nutrition called 'Total Parenteral Nutrition' via a line into her heart called a Hickman line. This means Chloe is connected to a drip for anything between 12-18 hours a day. This method of feeding brings high levels of risk, particularly surrounding risk of infection but for Chloe it is the only way to get nutrition and without it she would not survive. Type 3 Intestinal Failure is not something that can be cured and Chloe is going to need this method of feeding for the forseeable future.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome causes Chloe persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. Chloe sleeps for many hours of the day and all night, yet still wakes up exhausted. Chloe feels mental exhaustion as well as physical, meaning she cannot even concentrate on simple tasks. Chloe also falls asleep very unpredictability in unusual circumstances (such as in a middle of a conversation she is having) Which Chloe finds frustrating as it is exhaustion she is unable to control. This will all be addressed at a more suitable time.
Enteric Mastocytosis/Mast Cell Activation Disorder
Thids is characterised by the accumulation of genetically altered mast cells and/or abnormal release of mast cell mediators, affecting functions in potentially every organ system, particularly the skin, gastrointestinal tract, cardiovascular and nervous systems. This gives Chloe severe rashes and affects her ability to breathe and swallow. Chloe has allergic reactions to things she is usually fine with making this something that is extremely difficult to predict and control. This means that Chloe can be given a medication one morning, but when recieving that same identical medication the next morning or even later in the same day- she can suddenly have a reaction.
Ehlers-Danlos Syndrome type 3 (Hypermobility Type)
Ehlers Danlos Sydrome is genetic connective tissue disorder that means Chloe does not have enough colagen in her body. Colagen is the main protein of connective tissue and effectively the bodies 'glue' that holds everything together. Because Chloe's body lacks this 'glue', parts of her stretch that shouldn't.This includes her organs, joints, skin etc... and is one of the main reasons believed to cause the many dysfunctioning systems of Chloe's body. Ehlers Danlos can get worse over time, something that Chloe is experiencing. Where as Joint hypermobility on its own causes joints that easily move beyond the normal range expected for a particular joint, Ehlers Danlos Syndrome can also have a huge affect on the internal organs and bodily systems. That being said, the hypermobile side of the condition is still very apparent and Chloe suffers dislocations of many of her joints on a regular basis. Chloe is currently waiting for her hip to toe hip abducting callipers, that are being made currently to try and stop some of Chloe's dilocations in her lower half, and the internal rotation within her joints that is caused my such lax ligaments and tendons.
Fibromyalgia is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased susceptibility to pain, Fatigue and muscle stiffness. Chloe suffers with all these symptoms.
Addison’s disease is a rare disorder of the adrenal glands. It affects the production of two essential hormones called cortisol and aldosterone. Chloe is on steroids which replace her own levels. Without them it would have dangerous effect on Chloe’s body and she could go into adrenal crisis which has the potential to be fatal if left untreated. Chloe's level of steroids has had to be increased multiple times as her natural levels decline.
Atonic Bladder Failure
Due to Ehlers-Danlos Syndrome causing a lack of elasticity in Chloe's organs, her bladder has stretched over time and this has weakened the muscles to a stage in which it can no longer empty. Chloe had to have a Suprapubic Catheter which is placed through the skin on the lower abdomen and goes into the bladder, creating a way to empty the bladder. This has not been easy for Chloe, as the spasms it causes are extremely painful. Chloe is waiting to see a consultant in Birmingham with a high level of knowledge in cases such as Chloe's in the hopes he will be able to offer a more long term solution to the problem.
Functional Neurological Disorder
After Chloe's most recent Neurology appointment, she was diagnosed with a Functional Neurological Disorder, triggered by the extreme pain Chloe first experienced in the beginning of 2014. This is likely to be contributing to Chloe's seizures and leg paralysis, as well as the severe decline Chloe has recently had in cognitive function, especially her short term memory and concentration. In this appointment Chloe was informed this is something that Neurology had in fact diagnosed in the summer last year, but due to the amount of people involved in Chloe's care, and how unwell she was at the time- it unfortunately was overlooked until now. Chloe is now being referred to a specialist centre in London and a consultant in Birmingham as it is believed her FND is closely linked to the severe Autonomic Dysfunction she experiences. A Functional Neurological Disorder is due to a problem with the functioning of the nervous system and the brain’s inability to send and receive signals properly. FND can be as debilitating as Parkinson’s disease and MS and have many similar symptoms. FND can produce a wide range of symptoms, some of which include: chronic pain, seizures, poor memory, muscle weakness, limb paralysis, sleep disturbances and sensory symptoms, all of which Chloe experiences.
Thank you for taking the time to read Chloe's story. Support to change the situation Chloe and her family face is gratefully welcomed. For more information please visit: www.chloesdream.co.uk
Thank you to everyone for the ongoing support toward Chloe and her family. As many know, Chloe has been acutely unwell this week and is in hospital fighting her way through a nasty infection that has caused her to be very unwell. Chloe is doing extremely well in the circumstances and sends thanks to those that have provided an overlwhelming support network of love and well wishes.
Please remember that Chloe and her family are grateful for any support possible to make this build happen and more information can be found at:
The first being last week, when Chloe was only left momentarily, and began having a seizure which caused violent jerking which in turn threw her from her wheelchair onto the hard floor. There is not space in Chloe's room for a mobile hoist which means when Chloe is unconscious and has an incident in which she ends up on the floor, she has to stay there. It is not safe for Chloe or others to try and lift her from the floor when she is unconscious for many reasons, one example is her very unstable hips. Chloe can end up spending many hours unconscious after a seizures and is often very disorientated and would not be able to assist being lifted at all. This is damaging for Chloe's joints, as well as putting her at risk of pressure sores and generally not a situation anyone should find themselves in due to a lack of equipment.
Chloe is also having her full leg immobilising callipers fitted after a final fitting a few weeks ago. This is going to make the moving and handling of Chloe even more difficult as her legs will be immobilised in a straight position. It is also going to make getting Chloe in and out of the house extremely challenging.
The most recent incident was yesterday. Chloe woke up extremely unwell and an ambulance had to be called immediately. It was extremely important to get Chloe to hospital and as Chloe was not well enough to leave the house in her wheelchair it meant once again Chloe had to be carried.
Thankfully Chloe's Step Dad had not yet left for work, and was able to do this, otherwise Chloe's Mum would have had to do so and with a bulging disc in her back Suzé should not even be lifting Chloe for transfers let alone carrying her to the ambulance outside. This being said, it is still not safe to be carrying Chloe, especially when she is acutely unwell. She is likely to have a seizure when her body is under extra stress and strain and if this happened whilst being carried she could end up badly injuring herself and others involved.
Chloe was blue lighted to Coventry yesterday after becoming very unwell with suspected sepsis. Chloe was looked after by a fantastic paramedic crew who ensured a trauma call was put through to Coventry so that there was an ITU consultant ready and waiting for Chloe in resus. Vascular access were also fantastic and managed to get another line in Chloe, as it is not possible to use her Hickman whilst awaiting culture results especially when showing such classic signs of sepsis. Chloe was given lots of antibiotics and steroids making her feel much better than when she first woke up, but it is important the source of infection is identified so she can be treated appropriately.
Please keep Chloe in your thoughts and prayers, she is fighting with a smile as always!
Since being home Chloe has also been for an appointment in Birmingham as she is going to be part of a clinical trial for people with non-epileptic seizures. Chloe is always more than willing to take part in this sort of thing as even if it doesn't benefit her, the collected information could potentially benefit others in the future.
Chloe went for her calliper fitting last week and saw her new callipers for the first time. The callipers are from hip to toe on both legs and will totally immobilise her lower half. Due to the elasticity in Chloe's joints, her hip joints (particularly the right side) have enternally rotated, meaning the ball part of the joint is not sitting correctly in the socket. This has then sent her ankles out of alignment and her knees are very unstable. The callipers are going to pull all her joints back into the correct position and hold them there, which will hopefully minimise some of the pain they cause with dislocations and rotation.
The issue with this is that it is going to make moving and handling Chloe much more difficult, making transfers without a hoist unsafe. There is no option but to have a hoist back in Chloe's room, but with such limited space already this is going to be challenging, as the space still has to accommodate so much other equipment. Chloe's family are still working closely with the council in regards to accommodating adaptations, but this is not an easy process and Chloe really does need a safe space as soon as possible.