Help Luke fight Lyme Disease

£8,890 of £30,000 goal

Raised by 139 people in 21 months
Please help us get specialist Lyme Disease treatment in the U.S; my son is only twelve and has been battling this hideous disease for three and a half years now.
He's had a bone tumour removed, and missed out on more than two years of school.
He's made good improvements with the treatment we've had to pay for so far, but still suffers debilitating symptoms daily.
We've now had to make the extremely hard decision to take him to a specialist in the U.S for assessment and treatment - we don't want to risk any further damage being done, and we want to give him the best opportunity to regain his health.
As a parent, we'd do anything to help and protect our children - please help me help mine!
We're hoping as well that by sharing our story, it will help to raise awareness about tick-borne diseases, and stop any other families going through this!
Thank you!

Here is our story:



I had no idea in May 2013 when I dropped my then nine year old son off at a sleepover party in Windsor Great Park that it would be a life-changing day for our family.
He came home the following morning with a tick attached to his arm, but we didn't recognise it as such at the time - we had never seen a tick before, or heard of Lyme Disease, and we had no idea that there was a risk from biting creatures in the U.K (we've since learnt that we are lucky to be able to date the tick bite, as the nymph ticks which carry disease can be the size of a poppy seed, so many who contract Lyme don't even recall a bite).

Awareness of Lyme is still poor both with the general public and within the medical profession, and by the time we managed to get a diagnosis, he had already been ill for eighteen months and was mostly bedbound.
It was a slow deterioration, starting with chronic abdominal pains, then headaches, nausea, fatigue and joint pains. By the autumn of 2013 I knew there was something seriously wrong with him, but no one could get to the bottom of it.

The following spring he had a bone tumour removed from his arm, and was diagnosed with a rare cancer-like condition. Frightening though this was, it was also a relief to have a name for his illness. The following six months involved numerous MRIs and full skeletal surveys to ensure there were no more tumours, but nobody could explain to us why he continued to deteriorate.

By the autumn of 2014 he was unable to attend school at all, and was mostly bedridden with pain and fatigue. He begged me to buy him a wheelchair, but made do with our elderly neighbours walking stick to get around the house on a bad day. He developed frightening symptoms, which we now know are linked to Lyme neuroborreliosis, when the bacteria cross into the central nervous system - he was unable to read, would forget how to write or speak, became light and sound sensitive, mostly lost his short term memory and was exhibiting alarming behaviour changes. This was our darkest time, and it was at this point that I thought we were going to lose him.
http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/ 

The second part of our journey began at the end of 2014 when we were finally able to get a diagnosis. We soon realised that this is what it must feel like to win the lottery, then realise you'd lost the ticket! There are currently no clear treatment guidelines for late-diagnosed Lyme Disease, and we were told it probably wouldn't be worth treating 'at this late stage'.
Lyme is a complex, debilitating, multi-systemic and misunderstood disease. The bacteria can attack any part of the body; brain, heart, joints spine....leading to potentially devastating results. One doctor recently said we could almost call it Lyme Aids because of the way it dismantles the immune system, as well as its complexity to treat.
https://www.youtube.com/watch?v=V9cX83eL8Ng

We've already spent thousands of pounds treating him privately, as there are currently no tick-borne disease specialists within the NHS (something that will hopefully change after a debate in the House of Lords last October). Luke has made progress with this treatment, but remains symptomatic, spending a large percentage of his time lying in pain, or dealing with symptoms like fatigue, nausea, abdominal pain or cognitive and processing issues. The pain can be both intense, and migratory; over the past few weeks he's had terrible pain in his back, wrists, ankles and chest, as well as abdominal pains and headaches - at times he's wanted to be taken to accident and emergency, because he said it felt like he'd broken a bone. The fatigue is also not just a normal tiredness, but a flu-like fatigue where you struggle to even stand up or walk around. This is no way for anyone to live, particularly a child.

We're now trying as a matter of urgency to get to see a more specialist tick-borne disease doctor in the U.S., who has knowledge and experience not just with Lyme Disease, but also the multitude of other infections that ticks can carry. He's achieved some really good results with late-diagnosed Lyme patients, and we're determined to stop the possibility of any longer term damage being done, and to give  Luke every opportunity we can to regain his health - he said before Christmas that he hoped to be given the chance to live a normal life.

Thank you for taking the time to read this; it's a reality we never imagined we'd be in this time a few years ago, and this has been probably the hardest thing I've ever had to write.
As well as fundraising, we're hoping that by sharing our story, it will raise much needed awareness about Lyme Disease, and hopefully stop other families and children going through this.
Heartfelt thank you for any donations you are able to give, and to any additional awareness you're able to spread!

http://lymediseaseuk.com/
https://caudwelllyme.com/
http://www.lymediseaseaction.org.uk/
http://www.visavissymposiums.org/
http://www.ilads.org/

PLEASE READ THE LATEST UPDATE TO SEE WHAT STAGE WE'RE AT WITH LUKE'S TREATMENT - THANK YOU FOR YOUR CONTINUED SUPPORT!
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It's been a while since I've done an update, and I wanted to thank everyone who has helped us so far, enabling us to be moving forward towards our second appointment in the U.S.
It's not just difficult finding the time to write updates, it's almost impossible finding the right words, and talking so publicly about my family.
There isn't the same level of knowledge and understanding about Lyme in the wider community that there is with other more 'well known' diseases, so in the hope of eliciting a deeper level of understanding about Lyme, and our continued need to fundraise for treatment, I wanted to detail some of the symptoms we have to deal with:

* Permanent spinal damage
* A large bone tumour
* Postural tachycardia
* Alzheimer type symptoms - short term memory problems, forgetting how to perform basic tasks, losing words and difficulty speaking, not recognising people
* Crippling headaches, abdominal and back pain
*Numbness and loss of sensation in lower limbs
*Hip, knee, ankle wrist and shoulder pain
*Flu-like fatigue/inability to walk with fatigue
*Autism-like sensory and processing issues
*Chest pain
*Pain in the soles of the feet 'which feels like walking on knives'
*Behaviour changes: mood swings, anxiety, OCD
*Teeth and jaw pain
*Eye pain and blurred vision
*Dizziness
*Nausea
*Light and sound sensitivity
*Muscle weakness and pain
*Pain in arms and legs
*Inability to stand up from a sitting position without support
*Neuropathic pain
*Shortness of breath/being unable to take a deep breath

This is by no means an exhaustive list, just a snapshot really.
As a parent, I wasn't given the correct tools to protect my children; I had absolutely no knowledge of Lyme Disease. I hope that by sharing, we can help other families and children - there have been over 2,500 views of the site, and we know it has helped at least one child get the crucial early diagnosis needed.
This disease has been life-changing for us, and we continue to need to fundraise to try and beat it...Luke says he hopes to be given the chance to live a normal life.
There are a couple of fundraisers coming up - look out for 'Leaping for Lyme' which we'll be promoting soon...five local mums doing a sponsored abseil off The Orbit in Olympic Park on 29th April (in lime green). If anyone would like to encourage us to throw ourselves off the U.K's tallest sculpture and kick the donations off, please add 'abseil' in the comments if you donate, so we can gauge how much we've raised.
I just wanted to end by saying that the support from friends and family has been phenomenal, and the supportive and kind messages have had a tremendous impact on us all, so heartfelt thanks to everybody!
(and this is why the updates are few and far between, because they're just so long!)








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Thank you to everyone who's supported us, and enabled us to reach more than £5,500 so far....messages of support have been overwhelming, and we've had donations from as far afield as Canada and Hong Kong!
We are fortunate as well to live in a lovely community; our local chemist has been collecting donations for Luke, and there are at least two other planned fundraisers in the near future...

Meanwhile, we've had to make the decision to book the appointment in the U.S; we can't wait, as Luke is just deteriorating again in front of us - as any parent who has had a child battle a disease will know, the pain of watching this is immeasurable.
Thank you again for continued support, and I'm posting this update with an increased urgency.


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So with the generosity of friends and family, friends of friends, and people I've not even met, we've now reached £3,000....thank you everybody!!
The urgency of getting to a tick-borne disease specialist continues to increase, as Luke continues to deteriorate at the moment. We've seen alarming flares of neurological symptoms in the past few weeks (dementia-like short term memory and processing issues), combined with chronic fatigue, chest and spinal pain, headaches and abdominal pain, and joint pain in wrists and ankles.
Luke continues to have the most amazing attitude despite all this, and he makes me proud every day!
Please continue to share to get him the help he needs.
People have been amazing; supportive, encouraging and kind....thank you!!
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We've been overwhelmed with all the donations and messages of support - thank you so much!
Desperately hoping to get to the U.S for an initial visit before Christmas if we can; Luke's had a resurgence of some alarming symptoms recently - particularly chest and spinal pain. The implications of this could potentially be devastating, and he has to get seen by a tick-borne disease specialist as a matter of urgency!
Heartfelt thanks to everyone who has supported us x
+ Read More
Read a Previous Update
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£8,890 of £30,000 goal

Raised by 139 people in 21 months
Created September 27, 2016
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£20
Anonymous
3 months ago
£10
Anonymous
4 months ago
£20
Anonymous
10 months ago
DB
£20
Dave Blayney
14 months ago

I hope you hit your target and Luke gets the required treatment. All the best !!

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