Get Keira her life back!

Keira is our beautiful, strong 13 year old who up until Feb this year, was a perfectly happy and healthy, normal child.

What started with trigger finger, progressed onto several other muscle contractures and deformities in her fingers. She went through several traumatic episodes where plastic doctors repeatedly tried to bend her fingers back, including under anaesthetic & nearly loosing her life due to an adverse reaction to fentanyl.They had no success and every attempt caused more pain. Keira had an MRI and several blood tests which all came back as normal. Having then spent a few days in hospital in extreme pain due to her fingers being bent in strange positions and severe muscle contractions, under observation with several different doctors paying her a visit, no-one could give us any answers, and she was discharged with a referral to GOSH. This all happened between Feb and May

By the time the first GOSH visit came around in June, Keira was now experiencing a more widespread dystonia. Her legs were locking and we had to get her a wheelchair to get her around. We met with neurologists at GOSH who investigated her symptoms and then told us that they think she has FND or functional neurological disorder, which used to be called conversion disorder because it is supposedly an adverse reaction to stress and trauma which messes up your brain signalling and causes these strange symptoms. So we were sent away with a leaflet and a plan to make a plan for treatment. Physio, Occupational therapy. Cahms intervention. They also prescribed her gabapentin which seemed to eleviate the dystonia - for the moment.

By the end of June Keira was experiencing severe motor tics. And almost constant head and neck jerk and a couple of weeks later this turned into constant exhausting verbal tics which are absolutely debilitating for her. Around the same sort of time she started experiencing 'drop attacks' or what we now understand were dissociative seizures.

Since then Keira spent nearly a week in the hospital as her seizures became serious and she was having convulsions. She had an eeg which was mainly normal with a single blip that she still need double checking with a sleep eeg. They tried once already to do the sleep eeg but she was seizing so much she couldn't sleep.

Keira no longer leads a normal life. She is being robbed of a normal childhood. She can't go to school, can't be left unattended. She has days where she has to use a wheelchair to move. She has had to be so strong and it isn't fair.

In addition to all of this Keira also experiences the following:

* Hallucinations & Night terrors

* Separation Anxiety

* Food Restrictions

* Loneliness, depression & intrusive thoughts.

We need help raising the funds to help with the following:

* PANS/PANDAS & Basal Ganglia Encephalitis is a condition that is not recognised or tested for by the NHS that looks very much like what Keira has - there are cases of children being misdiagnosed for years before they are finally correctly diagnosed, usually privately. We want to completely eliminate this possibility so that we do not waste years pursuing treatments that will not work. There is a doctor in London that specialises in this exactly so we want to be able to pay for the consult, associated testing and treatment if needed.

* Treatments such as hypnosis, cbt, cranial sacral therapy, music therapy and more, we are open to suggestions!

* Any excess will be donated to an FND or PANS/PANDAS charity

We will update on her progress and spend as we go! We will be organising different fundraisers and are open to ideas! Watch this space!