Help Luke fight Lyme Disease

£10,935 of £30,000 goal

Raised by 185 people in 34 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. 

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.

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!

+ Read More
Two weeks today, this amazing family will be taking on a Triathlon to help us continue Luke's life-changing treatment - thank you just doesn't seem a big enough word for this incredible gesture, and for all those people who have donated (many for a second time!) since I posted our last update!
We're desperately trying to raise funds for our next visit to the U.S now, to see the specialist whose treatment has made such a colossal difference so far.

If anyone would like to support them in their 400 metre open water swim at Dorney Lake, followed by a 10.6km bike ride...then a 2.5km run, donations can be made to the page, sponsor forms will be available locally....or if you are local, come along and support them on the day!
+ Read More
Please help us continue Luke’s treatment…

Having to raise money for medical treatment for your child is something you never imagine in a million years you’ll have to do in the U.K! Unfortunately, the ‘rare’ diseases that we’re dealing with just aren’t covered at the moment by the insurance policies we took out when we started a family – we’re just not on their ‘list’. Not fitting into any boxes, and with no tick-borne disease specialists as yet within the NHS, we’re left between a rock and a hard place, still having to fund everything ourselves!

We knew when we started this treatment journey that it was more than likely going to be a long one; that Luke’s multi-system, neurological, late diagnosed Lyme Disease could be hard to treat, and that success wasn’t a guarantee. It’s been a complex twelve months, with both triumphs and set-backs, and I wanted to send heartfelt thanks to everyone who has supported us!

Since being bitten by ticks in the U.K and contracting Lyme Disease, we’ve been faced with not only chronic and disabling symptoms, but also now a multitude of other diagnosis and diseases – triggered it’s believed by the Lyme infection. The first was a diagnosis of Langerhans Cell Histiocytosis, where a bone tumour was removed from the site of the initial bite:
We then progressed to spinal damage at the site of the second bite, and more recently, a diagnosis of a life-changing auto-immune disease – the Lyme bacteria can cause havoc with the immune system.

Lyme disease is insidious; the bacteria is corkscrew shaped, and it literally twists down into bone, joints, tissues and organs doing damage. It’s got techniques for eluding both the immune system and antibiotics, and as we’ve found out with Luke, it can be incredibly difficult to treat unless it’s caught in the early stages - even more so when it’s been joined by some of the other diseases that ticks can transmit (ticks have been called ‘nature’s dirty needles’).

The treatment we fundraised for last year enabled Luke to do things that other children probably take for granted - school journeys, birthday parties and days out with friends. Even though he was still spending the majority of his time having to lie down, the fact he was able to do these things at all was just incredible! Having been ill for so many years though, and wanting to do EVERYTHING, we pushed too hard too soon; the result of which was a huge step backwards physically, which led to a resurgence of neurological symptoms after he was forced to stop treatment for a few months over the winter.

We’re now at the point of starting to move forward again; he’s back on treatment, and we’re already starting to see real progress again. It’s a lengthy and complicated process; one way of describing it would be to say we’re literally peeling back the layers of infection (it’s so much more involved and complex than that though). We’re absolutely determined to give him the best chance possible of getting into remission.

We were told initially that Luke’s Lyme would be too late to treat. Not accepting of this, we made the extremely hard decision to start this journey. I had to give up my job to look after him, and we’ve since had to remortgage the house; both decisions that would be made again in a heartbeat – we knew almost as soon as we started treatment that there was hope.

Raising money for a disease that people mostly don’t understand or haven’t heard of, has been like walking through treacle though. The majority don’t realise the complexities and seriousness of it; due to the nature of the disease, there isn’t anything people can ‘see’. Luke may have spent 95% of his childhood since he was only nine having to lie down at home in pain and with chronic fatigue (and worse), but the other small percentage of time when he’s able to go out and about, he looks relatively ‘fine’.

We have a couple of amazing fundraisers on the horizon though (details to follow!) and I’ve been bowled over by some of the support we’ve had. Please help us help Luke continue his treatment…we want to carry on moving forward - to give him the chance to be able to continue his childhood and education (he said he hopes to be given the chance to live a normal life). We can already see tangible improvement with some of his symptoms since he’s started treatment in the U.S, particularly relating to the crippling joint pain he had previously in both his ankles and wrists.

Thank you for taking the time to read this, and please share if you’re able…we’re hoping we can also help others by raising awareness about Lyme and tick-borne disease. According to the World Health Organisation, Lyme is the fastest spreading vector-borne disease in Europe; let’s give parents the knowledge and tools needed to protect their children, and try and stop this happening to any other families…


‘Be tick aware’ – Public Health England’s new toolkit for raising awareness of the potential risk posed by ticks and tick-borne disease in England:

With inadequate testing, and poor awareness, Lyme can sometimes be either missed or misdiagnosed. When the central nervous system is involvement with Lyme Disease, the bacteria can cause ‘States that mimic other defined neurological disorders such as Parkinson’s disease, MS, Bell’s palsy, stroke, ALS, Motor Neurone Disease’.

#Lyme #Checkforticks
+ Read More
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
*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!)

+ Read More
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.

+ Read More
Read a Previous Update
Be the first to leave a comment on this campaign.

£10,935 of £30,000 goal

Raised by 185 people in 34 months
Created September 27, 2016
Your share could be bringing in donations. Sign in to track your impact.
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
23 days ago
Julie Cox
3 months ago

In lieu of not making your fund-raising this evening .... With love xx

Susie Figueras
5 months ago
Fundraising coffee morning!
8 months ago (Offline Donation)
Val Coomber
8 months ago

I would like to see Luke receive the treatment he needs

Laura Cares
9 months ago
Calum Thomson
10 months ago
Katie Thomson
10 months ago
George Darby
10 months ago
Catherine Williams
10 months ago
Be the first to leave a comment on this campaign.
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a £5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.