HELP FOR HARRY : Tourette's & Seizures

My lovely 12 year old son Harry, has severe sudden onset TOURETTES SYNDROME , OCD, PTSD, rage attacks, self harm and debilitating seizures. He uses a wheelchair now 70% of the time due to pain, dystonia , thd daily seizures and exhaustion. We now believe its possible that all these symptoms may be part of something known as PANDAS , but there are only a few specialists in the UK who can diagnose and possibly treat, and they are not NHS but private clinicians based in London. Dr.Tim Ubhi and Dr. G. Morgan. They have both agreed to take Harry on as a patient, but even basic blood tests cost upwards of £500, with transport , accomodation, and ongoing drug trials costing thousands.

I'm a single parent and full time carer, with no way to increase my income. Our family is in crisis because if this cruel disease, and reaching our goal of £8,000 will honestly change our lives. Read Harry's Story here -

*Costs updated in August 2023 due to the conplexity of Harry's case and price increases in the sector.

 

 

 

 

 

 

Harry's transient Tics and anxiety EXPLODED into full blown Tourettes in January at the start of school term. Within weeks he had developed multiple complex motor & vocal tics, including Coprolalia (the swearing one!) The jerks, and spasms give him alot of back and neck pain. The vocal tics, embarrass and upset him. His mental health is suffering. His self harm tics are extremely dangerous, and he screams "I hate myself" which is heartbreaking for a mum to hear. He only got referred to Tier 2 CAMHS - and I'm begging for more intervention and support. Harry also developed worrying epileptic -type seizures which happen up to 4 times a day and we are still awaiting neurology to investigate. They are scary as he is completely unable to move, and unresponsive, can happen anywhere any time. I don't drive, and I can't lift him. So we are becoming more and more scared to go out.

 

 

 

 

Harry has had OCD and bad anxiety for a couple of years due to PTSD after witnessing domestic violence, and struggling with Covid Lockdowns, this has just become even worse.

Also aged 11 weeks Harry survived Bacterial Meningitis , which left him with moderate hearing loss. He has a hearing aid, but he can't wear it due to his sensory processing difficulties and damaging it when he has head hitting tics.

 

 

 

 

As I am unable to work due to being a full-time carer already to my eldest with Autism. I've sadly been forced to use money allocated for my autistic son, to fund aids and equipment for Harry which isn't fair. They BOTH need weighted blankets, sensory toys, ear defenders and special diets. They BOTH need their care needs to be met, without compromise. 

 

 

 

 

 

Harry is the kindest funniest boy you could ever meet. He has offered to do a bake sale, and sell his toys in order to get a wheelchair - which he now needs to use daily because of the pain due to Tourette's Tics, and the frequency of his seizures. I'd managed to get hold of a very basic one, but it is heavy and difficult to manouver. Its not made for daily use, traveling by public transport or going 'off road' to the play park. We are all excited and dedicated to helping ourselves, as well as gratefully receiving donations. You can check here for photos of Harry's BAKE SALE, jumble sales and sponsored trampoline bounce ( all his ideas!) and we'll be doing alot to raise awareness around this condition- with any extra funds raised being donated to TOURETTES ACTION UK .

 

 

 

 

You can find out more about Tourette's Syndrome on the Tourettes Action website also about seizure types ( we don't know which he has yet ) here Functional Neurological Disorder and Epilepsy Info

 

Even the smallest donation will make a huge difference to our lives-

So how will your money be used to help Harry ?

 

The things Harry desperately needs are -

 

 

 

 

If you are able to help, that would be amazing- If you can't , then please share this page instead. And send some positive healing vibes.

 

 

 

 

Harry decided he wants to raise awareness and find support and friends by posting about his journey on TikTok- you can follow us there @heather_and_harry

 

God Bless, and thank you !

VIDEOS - WARNING SHOWS SEIZURES AND SCENES VIEWERS MAY FIND UPSETTING

Seizure At The Park 

Why Harry Needs A Wheelchair for seizures 

Tic Attack or a Seizure 

REALLY bad morning trying to get to school