First of all... thank you so much to anyone who is about to read Brody's story.
In 2020, Brody was diagnosed with a rare paediatric neuropsychiatric disease called PANDAS. (Paediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal Infections)
PANDAS is an immune mediated response to a usually commonplace strep infection, such as an ear infection, chest infection, strep throat, scarlet fever amongst others. Shortly after an infection, antibodies attack the brain and immune system causing a number of really severe symptoms.
Brody lives with severe OCD, tics, depression, anxiety, mental regression and a severe inability to sleep. The worst symptom of all are the hallucinations and psychotic behaviours Brody experiences on a daily basis. These symptoms cause him a great deal of fear and he can become suddenly very violent. Brody is currently unable to socialise or see any friends due to his violence tendencies.
Brody suffers from childhood mania, he experiences visual hallucinations, has intrusive thoughts telling him to kill himself and me. Brody also hears voices and follows their commands, throwing himself down the stairs, or sometimes trying to jump out of an upstairs window.
As a result of Brody's illness I am no longer able to work due to having to watch Brody every moment of the day and night just to keep him safe. He currently sleeps during the day and is awake during the night although this sleep pattern changes with no warning.
Those who know Brody are aware that he’s the sweetest, kindest and most gentle little boy, and to see this illness take this part of him away is heart-breaking. Just getting through the days is extremely difficult for both of us and this illness has made it very hard for us to live anything close to a normal life. We just want to be able to go outside and enjoy the sunshine, go to the park and play with other children, have a decent quality of life. Brody and I now live alone and have little support from family as they are dealing with their own ill health and we have lost all our friends through the trauma of living with this condition.
There just isn't enough knowledge on the NHS about these conditions and so treatment is very limited and certainly not enough to help Brody. Until now I have been able to use what money I have had to fund a little private treatment for him with some PANDAS specialists but I will not be able to pay for ongoing assessments for much longer and certainly cannot afford the necessary tests and treatments that he needs.
Brody needs a substantial number of tests with a specialist Neurologist and a specialist Immunologist. Brody also requires fortnightly appointments with a specialist Psychiatrist just in order to maintain the treatment plan he is currently on, which is helping to calm him, but more tests are needed to identify the best course of treatment. Tests will cost just over £12,000 and I am hoping to raise an additional £3,000 to cover the costs of Brody's Psychiatric appointments, so that I don't have to worry about losing the small amount of treatment we currently have.
I do not find it easy to ask for help and have found it difficult to make the decision to set up this fundraiser, but desperate times call for desperate measures and we have exhausted every other avenue.
I know that things are difficult for everyone with the current Covid-19 situation, but I am so hopeful that people will read our story and feel compelled to donate and share the link. Not only to help Brody but also to help raise awareness about this life ruining, hellish illness which has stolen my beautiful child from me.