Please help my son Ryan Shields enjoy a happier life

I would like to tell you about my son Ryan and the terrible ordeal he is living through because of a rarely diagnosed illness that he developed when he was a boy. And, although I feel terrible about asking for help, I really do need your financial support to give my son a chance to live a happier, more normal life and to end his years of torment and sadness.

The condition that Ryan suffers from is called Paediatric Acute onset Neuropsychiatric Syndrome – PANS for short. He also has an extreme version of PANS called PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal). These names are confusing and don’t spell out the horror that these conditions have made of Ryan’s daily existence. 

Ryan’s childhood is stolen by this terrible illness

Until the age of 12, Ryan was enjoying a normal, happy childhood. Yes he had some challenges. Ryan is dyslexic and has other issues about how his brain processes information coming from his senses. In 2010 he started at a mainstream school which specialises in dyslexia.  He absolutely loved it there.  During the first parents' evening I was told he had ‘amazing’ recall and he was praised for being such a well-behaved, considerate and vibrant student. 

The following year, Ryan became very ill with a bacterial infection called strep throat. In the months that followed he became very withdrawn.  Suddenly he was full of anxiety.  Teachers noticed his handwriting had begun to trail down the page. I could see that a light in his eyes had gone out. He repeatedly suffered with tonsillitis. He developed a throat clearing noise, and when I asked, ‘Do you realise you’re making that noise?’ he replied, ‘Yes, but I can’t stop it.’  He told me there was a voice in his head telling him to do things and that he needed help. 

By 2012, he could not leave the house.  He washed his hands under scalding water, he showered for hours at a time, not because he was a ‘clean freak’, but because if he didn’t he believed someone close to him would die.  He lived with pure terror 24 hours a day, consumed by intrusive thoughts.  The throat clearing noise had become screaming and he was experiencing involuntary ‘tics’ in his face, arms and legs.  His body would convulse so badly it moved furniture up the walls. He was physically hurting himself because the pressure in his head was so severe. 

I watched helplessly as an invisible monster took over my child, continuously torturing him.  He would not let me touch him as he feared I would die as a result.  He could no longer eat or drink. My son was begging repeatedly to die.  Finally, he was admitted to hospital. 

A doctor gave him antibiotics for the tonsillitis. His condition began to improve only no one in the hospital had linked the throat infections and antibiotics with the behaviours.  Within a few months we saw more of the ‘real’ Ryan.  He was back his bubbly, jokey self. After seven months he came home, and we made every effort to move forward with our lives, but the symptoms returned and eventually he was readmitted to hospital for a further five months. 

Since then Ryan, who is now 22, has suffered repeated flares of his condition. He is now eight months into his latest flare-up. They are so painful and terrifying for him that I really do fear for his future, even for his life.

Our struggle to get medical help to ease Ryan’s pain and anguish

Pandas is a rarely diagnosed and complex condition that even some of the best medical experts have struggled to understand and diagnose. In recent years, the World Health Organisation has officially recognised Pandas in its database of internationally recognised diseases.

Sadly, our NHS, although a great organisation in so many ways, has not been able to understand and help Ryan. As a boy he was seen by CAMHs (Child and Adolescent Mental Health Services) but they could not offer him any help. At one stage he was misdiagnosed wit Tourette’s Syndrome

Ryan now has a formal diagnosis of both Pans and Pandas and his neuropsychiatrist has stated that Ryan would benefit from seeing someone expert in this field but there is simply no one in the NHS who can help.We have no choice but to see help from experts in private medicine. 

How you can help

There are issues impacting Ryan’s life which are “treatable”. We have met with a doctor in the United States and a private UK-based doctor. Ryan has complex genes, and although you cannot change your genes you can ‘clean’ them, and we are working with a specialist nutritionist to do this. The tests have also shown that he is in the advanced stages of severe adrenal exhaustion, that he is not excreting heavy metals which store in his organs including the brain. There are still tests which need to be done so we have a full picture of exactly what treatment is needed. One test is in Germany and will cost around £1,500. Likely treatment will include IVIG (Intravenous immunoglobulins) and Plasmaspheres which are exceptionally costly and would have to be done in London.

I just do not have the money to fund his treatment.  I am a single parent and had no choice but to give up my business and care for my son.  I am doing a degree in an attempt to get us out of the benefit system but have had to put it on hold to support Ryan.  I also volunteer with the charity, Pans Pandas UK, supporting their incredible work.

So please can I ask you to make a donation to help my son? I know it will make a huge difference. When Ryan is not in a Pans Pandas flare, he can function.  After being prescribed a long-term full dose of antibiotics in June 2019, his symptoms reduced dramatically.  By August that year he was able to go sailing and achieved a Royal Yacht Association qualification.  Afterwards he was invited to be part of a Journal group in Bangor University, where he was able to contribute with an intellectual clarity that bore no traces of any mental illness.  Bangor University is the place where he would like to study Psychology. 

Like my beautiful son Ryan, I find it excruciating to ask for financial help, but I find myself with no other choice.  I will do anything to get him well and will continue to help others as this is something I can give back.  Please find it in your heart to help, no matter how small in monetary value it is, it will mean everything to us. 

We are all living in difficult times but hopefully things will soon start to get back to normal so if you are planning to participate in a fundraising event, could I ask you to consider Ryan as someone you would like to support? And it would be great if you could share a link to this page on your social media accounts.

Also on this page you will see a link to a video of me singing 'Warriors' which I wrote in support of Pans Pandas UK and all the families inflicted by this invisible monster. You will see me and Ryan at the end of the video. 

With deepest gratitude

Aly 

Here is some information which explains what Pans Pandas is:

https://www.moleculeralabs.com/moleculera-labs-pandas-and-pans-video/   

https://www.youtube.com/watch?v=4tb6QhhEUEE&feature=youtu.be&fbclid=IwAR2Fm3mp16reaqmVpFkDStwAiMDIYwe78BnyYnbw994_f6TNdnRF4DgNCX0  

Further information can be found at Pans Pandas UK

https://www.panspandasuk.org