<div>Just after Jessica’s (JJ) 12th birthday her life changed overnight when she started to experience uncontrollable movements in her arms and legs . Within 4 weeks she was having hundreds of tics a day , which were complex and vocal . Our GP was fantastic and sent us straight to A and E but unfortunately this was the start of the NHS letting us down . They said she had anxiety and just to ignore them !!
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<div>4 weeks after the first Tic , feeling extremely unwell and exhausted from all the constant movements JJ collapsed and started to have a seizure . I had never seen one before , rang 999 and she was blue lit into hospital . Kept overnight but again told it was anxiety . At this point JJ did not have any mental health issues so I knew this could not be right !
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<div>For the next 6 months we were rushed to hospital 3/4 times a week , often into resuss after experiencing up to 100/120 non epileptic seizures a day and many tic attacks . No support or referrals were made and we were given a diagnosis of FND . I knew this was not right and demanded referrals , no department would accept any referral as all said it was anxiety ( CAHMS said too complex ) and we were told it was because she was watching too much TIk TOK !! At this point I realised the NHS would not help and I had no choice but to look to private doctors .
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<div>Luckily we eventually got a diagnose of PANDAS - (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) this is a
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<div>neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in many awful symptoms .
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<div>Jessica’s main symptoms are
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<div>Tourette’s , Non epileptic seizures , paralysis, extreme pain /fatigue &amp; OCD She suffers many other symptom's and never feels well ! Due to the complexity of the illness her mental health also really suffered too with PTSD due to lack of care and trauma of the illness .
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<div>We class this illness as the gift that keeps on giving as symptoms change over time and can disappear then return depending on the trigger .
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<div>PANDAS is triggered by exposure to any infection or illness and JJ does not have to catch the illness to trigger a large flare in her symptoms . We know immediately when she is flaring as her pupils become huge , seizures and tic activity take over and often paralysis or dystonia occurs . ( her limbs lock in abnormal positions )
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<div>JJ has never felt well in 3 years , she has not been able to attend school and regularly uses a wheelchair either due to paralysis , seizures or extreme fatigue . The longest she has been paralysed for is 4 weeks ! JJ is losing the best years of her life , her teenage years where she should be having fun with friends and making memories !
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<div>We see many private doctors in London - immunologist , neurologist , psychiatrist and will continue to do so . Her treatment includes daily medication which includes antibiotics, anti inflammatorys , anti virals , ant depressants , and supplements .
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<div>She also has steroids when her flares are at there worst !
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<div>As you can imagine this has all come at an extreme cost and to date I have spent £40,000 with the help and support of my amazing parents .
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<div>The last option of treatment is IVIG
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<div>(Intravenous immunoglobulin ) this is not available on the NHS but is used to decrease symptoms and has the ability to “reset” the immune system.
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<div>The reason I have now set up this Go fund me is we have been offered the chance to get IVIG for JJ in London . This won’t happen overnight and comes at an extreme cost ! I have been told £12,000-£15,000 a time and she may need 3 infusions .
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<div>we will be organising some fundraising events and would be extremely grateful if you could support us in raising some of the money needed .
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Cassandra McGill

Rebecca Whyte

Iain S

Mrs J Denning

Natalie Craig

janet ewens

julia mcfadzean

Emma Legge

Anonymous

Claire Tellegen

Mark Thomas

Laura Gillespie

MR Jason Trotter

Amanda Wallace

Carole Pritchard

Sue Campbell

Help Jessica Huitson get Medical  treatment

platform

Platform is iOS

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PYMK has donors

iOS v12.3.0 and above

Help Jessica Huitson get Medical treatment

Still £12,384 to go. Help us build momentum.