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!
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!
PLEASE READ THE LATEST UPDATE TO SEE WHAT STAGE WE'RE AT WITH LUKE'S TREATMENT - THANK YOU FOR YOUR CONTINUED SUPPORT!
- Alex Friend
- Julie Cox
- Susie Figueras
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