Help Natalie's FND Journey Towards Recovery
Donation protected
If you have ever felt that dancing and performing were your life, that running, climbing, skating or horse riding were activities that made you feel alive, please support our daughter Natalie. They certainly were like the air she needed to breathe. Now all that is gone!
Let me tell you a bit about Natalie, her journey, and her determination. I am writing this by her hospital bed waiting for a bed in a neuro-rehabilitation center and praying that she can recover her life back again or at least some kind of normality.
Natalie has mild moderate learning disabilities, but her passion for dancing and performing was such that she managed to secure a place at Chickenshed Theatre to study performing arts. She has gone through multiple life challenges, but her determination to achieve her goal pushed her to overcome every upset and every setback. We are so immensely proud of her! But we truly never expected that life could turn to be so cruel!
Natalie started to have balance difficulties and blackouts only a few months ago. These developed into non-epileptic-seizures, provoked precisely by what she loved the most, dance! Movement and heat trigger seizures that can last up to 4 hours. It has been heartbreaking to see Natalie pushing to still go to college and attend lessons, despite being exhausted and unwell. Always giving 100%. By November 2020 she started to have tremors in her hands and legs, which later progressed into jerking her spine. By January 2021, the symptoms started to progress rapidly and on the 9th of February, she was no longer able to walk and started to deteriorate rapidly. As soon as she sits up or puts her feet on the floor her body starts jerking. She has terrible migraines set off by FND, her hypermobility has worsened, and she has now developed chronic pain, as her clavicle and chest bone dislocate now very frequently and the pain in her back, pelvis, and knees have become more intense. She also has nausea and stomach issues, food intolerances, and sometimes blurry vision. After a seizure, it is difficult for her to speak, and her memory is affected. Some tremors can last up to 11 hours nonstop.
We have been told that there is no cure, as it is for any other neurological condition. One-third of people improve, one third remains the same and one third gets worse. This is the case for many people with FND, but all these can change for the better. For decades it has been considered that it was triggered by trauma and anxiety, however, there is growing evidence that it could be also caused by low-level inflammation in the cells that create changes in the DNA, as some people do not suffer from stress, anxiety, or trauma and still develop this disorder. Sometimes is triggered by headaches and hypermobility.
We have been told that Natalie's case is very complex, but with intense rehabilitation and a multidisciplinary team, she may be able to walk again and manage her condition.
Please help us regain our beautiful daughter and the vitality she had and help others living through this nightmare that it is FND & NEADs. We will be eternally grateful for any donation you can spare, however small it may be.
Let me tell you a bit about Natalie, her journey, and her determination. I am writing this by her hospital bed waiting for a bed in a neuro-rehabilitation center and praying that she can recover her life back again or at least some kind of normality.
Natalie has mild moderate learning disabilities, but her passion for dancing and performing was such that she managed to secure a place at Chickenshed Theatre to study performing arts. She has gone through multiple life challenges, but her determination to achieve her goal pushed her to overcome every upset and every setback. We are so immensely proud of her! But we truly never expected that life could turn to be so cruel!
Natalie started to have balance difficulties and blackouts only a few months ago. These developed into non-epileptic-seizures, provoked precisely by what she loved the most, dance! Movement and heat trigger seizures that can last up to 4 hours. It has been heartbreaking to see Natalie pushing to still go to college and attend lessons, despite being exhausted and unwell. Always giving 100%. By November 2020 she started to have tremors in her hands and legs, which later progressed into jerking her spine. By January 2021, the symptoms started to progress rapidly and on the 9th of February, she was no longer able to walk and started to deteriorate rapidly. As soon as she sits up or puts her feet on the floor her body starts jerking. She has terrible migraines set off by FND, her hypermobility has worsened, and she has now developed chronic pain, as her clavicle and chest bone dislocate now very frequently and the pain in her back, pelvis, and knees have become more intense. She also has nausea and stomach issues, food intolerances, and sometimes blurry vision. After a seizure, it is difficult for her to speak, and her memory is affected. Some tremors can last up to 11 hours nonstop.
We have been told that there is no cure, as it is for any other neurological condition. One-third of people improve, one third remains the same and one third gets worse. This is the case for many people with FND, but all these can change for the better. For decades it has been considered that it was triggered by trauma and anxiety, however, there is growing evidence that it could be also caused by low-level inflammation in the cells that create changes in the DNA, as some people do not suffer from stress, anxiety, or trauma and still develop this disorder. Sometimes is triggered by headaches and hypermobility.
We have been told that Natalie's case is very complex, but with intense rehabilitation and a multidisciplinary team, she may be able to walk again and manage her condition.
There is no medication to cure FND, no magic pill and what is worse very little research. There are more cases of FND and NEADs than Parkinson's and MS, but hardly any centers specialized enough to treat these disorders and very few inpatient beds. It is like the elephant in the room!
We are creating this fund to help Natalie improve her life with things such as long-term therapy, care, and equipment. She also needs a service dog that will help her in her day-to-day life. Any funds raised that exceed Natalie's needs will be donated to The Wolfson Center - Queen Mary's Hospital to fund more inpatient beds and research on FND
Please help us regain our beautiful daughter and the vitality she had and help others living through this nightmare that it is FND & NEADs. We will be eternally grateful for any donation you can spare, however small it may be.
We and others in our situation would be so grateful if you could share this Go Fund Me link to raise awareness and funds.
Graham & Maria
Graham & Maria
Organizer
Maria Fuentes
Organizer
England