Help Heather

Heather started life as a healthy, vibrant baby and child. She loved the outdoors and was constantly on the go. As she grew into her teenage years, her flare for sports (she was a keen netball player and a skilled runner) and her passion for art and all things creative shone through. Heather was a really sociable teenager who loved seeing and going out with her friends. At age 16, she started to pursue her passion for art and design by studying in college, with the ultimate aim of obtaining a degree at university.

Shortly after starting her course at college, Heather started to develop unusual symptoms such as dizzy spells, loss of balance, brutal migraines and severe stomach problems. Doctors were at a loss as to what was causing her symptoms, which, since that time, have only worsened, with doctors continuing to struggle to find any real explanation or treatment.

Heather is now 25 years old and has been struggling with her health for almost ten years, with doctors continuing to be able to find no treatment that has been able to alleviate her debilitating condition, which now often leaves Heather unable to leave her bed or home, without the use of a wheelchair.

In terms of diagnosis, Heather currently has three main diagnoses: Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) and Fibromyalgia, and then more recently, Hypermobile Ehlers-Danlos Syndrome (h-EDS), which is a genetic, connective tissue disorder affecting many different parts of the body. H-EDS is caused by defects in a protein called collagen, which causes joints and skin to become loose and easily dislocated.

Whilst we have these diagnoses and she sees a neurologist in the NHS, Heather’s symptoms have continued to worsen, especially in the last 2-3 years, to the point she is reliant on a wheelchair and is mainly housebound, only really going out for appointments. Heather suffers from chronic and intense pain throughout her body and finds even simple things like pottering around in the house or garden too hard now; she is simply too weak. Heather spends much of her time confined to her bed and lacks any ability to engage in things that used to bring her so much joy; even sketching or painting is now too much for her.

Her symptoms are wide-ranging from poor cognitive skills, co-ordination & memory to headaches and dizzy spells, plus more complicated neurological issues of how her joints move and her digestive system, meaning she is reliant on a wheelchair and requires a constant feeding tube, even with the feeding tube she struggles to maintain weight. Heather is now clinically dangerously underweight, and without the tube, she would not be able to sustain life.

Whilst under the neurologist, who the family have experienced to be incredibly supportive, the issue is that whilst continuing to be referred for further tests etc.. the waiting times go for months and months, all while Heather continues to deteriorate. Heather has now lost the use of one of her arms and is unable to straighten one of her legs.

Heather still has no further diagnosis or reason for her digestive symptoms or many of the more significant neurological symptoms, which means there is NO treatment plan in place; she is just constantly waiting for the next referral.

Why are we asking for your help now?

There is a condition known as Cranio-Cervical Instability (CCI) where the upper part of the neck is very hypermobile, which can impact how some of the nerves work – this condition ticks lots of boxes of Heather's symptoms – however, whilst this condition is recognised in the USA and Europe, it is not accepted in the UK on the NHS and therefore Heather is prevented from accessing any investigations for this – she is currently being advised to have palliative pain relief and care.

In order for this condition to be diagnosed and treated, Heather needs access to privately funded options, which are costly, but for every month we wait for the next referral, Heather’s quality of life deteriorates. We are looking at fundraising to support Heather to have access to the specialists who can assess for this condition, the specialist MRI‘s that would be needed to support the assessment, and if the diagnosis is confirmed, there are then two main treatment options which would open up for her. Two treatment options which would not otherwise be available and which may well make the difference between Heather being able to regain some level of quality of life as a 25-year-old young woman or from having to commence pain relief options normally reserved for palliative care.

The family are looking to fundraise to enable them to fund the cost of the relevant MRI scans needed for the diagnosis and to access the specialists who are now the only ones in the country who may be able to help. If the diagnosis is made, then the two options for treatment are injections into the main areas of weakness, which, if successful in reducing her symptoms, would be required for the rest of her life, at approximately £100-£200 per treatment. The injections may be needed several times each year. If the injections are not successful, then there is a surgical option which would cost approximately £30,000. Heather and her family are desperately hoping surgery does not become required and very much see it as a very last resort. Heather is also currently using a very basic wheelchair, which does not meet her needs, and a better, more specially tailored chair, would make day to day life so much better for both Heather and her family who care for her.

Those who know Heather know that despite all the challenges, Heather’s faith in God has kept a sparkle in her eye and a smile on her face. Her gentle and uncomplaining spirit is a testament to her resilience and strength.

If you feel able to contribute in any way to our fundraising efforts, however big or small, it would be amazing, and Heather and her family would be so grateful. Every little bit, no matter how small, could literally change Heather and her family’s life in the most incredible way.

We are not sure where this journey is going to take us but we are looking at lots of different ways we can raise money and we hope you will join in with us along the way.