Help Emma's Fight Against Lyme Disease

My daughter Emma has been living with an aggressive and advanced stage of chronic Lyme Disease for over 15 years now which has had devastating effects on every single area of her life. Emma was a perfectly healthy, active and adventurous child until she developed mysterious symptoms aged 12; initially affecting her learning and gradually deteriorating with serious debilitating fatigue, chronic pain, daily seizures and frequent viral and bacterial infections which impacted most of her teenage years and early 20s, until she was forced to leave university, give up her dream job, lose friends, relationships and her independence. It was not until aged 23, 10 years later that she was finally diagnosed with Lyme Disease.

In the years that followed Emma underwent extensive medical investigations and multiple treatments to deal with the many complex medical conditions which she has now been diagnosed with as a consequence of Lyme Disease. Emma made some amazing progress with the help of incredible doctors and treatments but sadly over the last 6 months Emma’s health has deteriorated drastically leaving her immobile, unable to function and relying on others for full time care.

Due to seriously low levels of energy other than for medical care she hasn’t been able to leave the house for over 5 months and when she does leave the house, requires a wheelchair as she is unable to walk more than a few metres. At home she spends around 23-24 hours per day in bed unable to get up; she has to be carried up and down the stairs because of muscle wastage and severe weakness. When she is able to get up to eat or go to the bathroom she is only able to stand for a few seconds before collapsing due to severe dizziness, balance instability and low blood pressure. Her muscle pain and joint pain has become unbearable and with her 24 hours a day. Emma is also in severe constant pain in her gut, making it incredibly difficult to eat; impacting her digestive system and is also losing weight rapidly, weighing just 7 stone. Her doctors believe Lyme Disease is seriously affecting Emma’s immune system, gastrointestinal tract and her central nervous system. Unsurprisingly her positivity is waning as it’s been almost 6 months of continuing deterioration and she truly has hit rock bottom.

The testing and treatment Emma now needs has to be self funded as it’s not provided by the NHS due to lack of resources. Everything we have invested into Emma’s health so far has come at a huge financial cost to our family who have spent our life savings and sacrificed as much time and energy as possible to help Emma fight this devastating disease and get well. Both Emma and myself are currently unable to work as I gave up my full time job to care for her to date. Emma has also sold many of her treasured possessions to fund her treatment.

The prognosis looks very promising as long as Emma gets the proper treatment she crucially needs but as a result of her Lyme Disease going undiagnosed for so long (early diagnosis is key to ensure a quicker and easier recovery) there has been long lasting damage to her body which makes the treatment needed extremely complex. The goal is to raise £25,000 to help cover medical costs. All funds will go to the doctors appointments, tests and treatment.

To give you an idea of what Emma needs:

She needs to have an immediate appointment with her Lyme specialist doctor and to retest the levels of Lyme Disease and other co-infections to confirm what specifically has caused her to deteriorate so drastically so we know precisely what we are dealing with. The immediate tests and appointment alone cost around £2500. Emma needs to begin treatment of nutritional and detox infusions as soon as possible on a daily basis for around a month to stop the deterioration, get her stronger and more stable before she is able to start treatment for Lyme disease and co-infections. These infusions alone cost around £500 per day. Following this the treatment will be a combination of medications and supplements which can cost between £1000-£2000 per month for at least a year.

Further regular doctors appointments and tests will be required to monitor Emma’s health throughout the course of the treatments. Emma also needs to have tests for certain thyroid disorders, autoimmune diseases and her ongoing digestive issues as the doctors believe these are a consequence of Lyme and could explain her recent rapid deterioration. Depending on the results different medications and treatments will be required.

Further treatments are needed for the damaged ligaments at the base of Emma’s skull which have been found on recent x-rays causing Cranio-Cervical-Instability which is suspected to be contributing to her severe neurological problems. Treatments with her Lyme cardiologist are also needed to help stabilise her heart rate, blood pressure and the effect Lyme has had on her autonomic nervous system (POTs). Once Emma’s health is in a better place she will need to work with a physiotherapist who specialises in Lyme Disease to build back the muscle wastage which is significant now to help her build back strength, ability and independence.

This is just a glimpse of the enormous toll this disease takes not only physically but also emotionally and financially; asking for help is incredibly difficult but at this point it is all we can do to help Emma fight this condition and give her the ability to live a life when all other options have been exhausted. Emma often says to us, ‘It’s been so many years and I’m alive in my head but my body just isn’t capable of living.’ It’s been heartbreaking to watch my child with so much promise lose her life to this devastating disease. Any support received from you, whether donating towards her treatment costs or sharing this page will make a real difference and mean the world to both Emma and our entire family.