Video: Heidi Luckraft shares her story with Notts TV’s Sharon Walia
A young Nottingham mum fighting a rare disease says ‘it would be a Christmas wish to get life-saving treatment.’
Heidi Luckraft, 38, from Beeston, was walking her dog in Wollaton when she was bitten by a tick four years ago from which she contracted Lyme disease, a bacterial infection, which she was not diagnosed with until last year.
She now must use a wheelchair or a zimmer frame to get around her home.
Heidi worked as a children’s entertainer and founded her own events company Dazzle Entertainment and wants to be back performing again.
Her family and friends are trying to raise money for her to get treatment in the US or Germany as her late diagnosis means she is unable to get the care she needs in the UK.
A JustGiving page has been set up to raise £60,000 to pay for the treatment; the total currently stands at just over £17,000.
This is Heidi’s story, as told by her…
“Ididn’t realise what it was at first as there was just a red bite and I thought nothing of it but then I developed really bad flu symptoms and a temperature of 40.
I started getting more pain, more joint pain and more symptoms that were associated with Lyme disease.
The pain has chronic to the point where you have thoughts; you don’t do it but you have thoughts that you don’t want to live in that pain.
You keep going because there are children out there who go through worse times and they have all inspired me to carry on.
I’d be there doing kids parties and I’d be dancing away and the next minute all the children’s heads would go blurry; my mouth would keep moving but my heart would be racing.
I look back at that day and Mark, my partner, saw that I had panic on my face because he knew something was wrong and then not long after that I just collapsed.
Luckily, I made it through the party but it just got worse and worse.
Video: Heidi’s daughters created this video to raise awareness of their mother’s condition
I hid it at the beginning from everyone, including my husband and my children.
I’d go through pain and smile through it, I’d do my gigs and end up out of it for a long time, I mean I used to do seven or eight a week and this kept reducing until I couldn’t physically perform.
I find it hard for my kids to see; my children have to see their mother in pain and they saw me have a seizure where my daughter ran out screaming.
Video: Heidi’s daughters, Ocian and Rhianna Weekes, speak about their mother
This year, I’ve been in and out of hospital about 17, 18 times and I got brain inflammation and had to have a lumbar puncture.
They did tests, they couldn’t find what was going on, they first thought it was meningitis so I was put on antibiotic drips.
I got bitten by a tick again this year in July, twice, both in Wollaton Park again when walking the dogs.
I went to the doctors who were researching all sorts of things as to what it could be and got so many different diagnoses but nobody knew what it was.
I got my bloods tests sent over to America, because it isn’t that well known about in the UK, for analysis which confirmed I had Lyme disease.
With the disease, you don’t just get that, you also get co-infections, and I’ve also got a malaria-type illness which you get through the bite of the tick.
Video: Heidi on what she did before Lyme disease took over
At one point this year I spent three months in bed, I couldn’t move, I had to have the windows shut all the time.
Even talking was causing me severe pain; I got very low and a little bit depressed as well because you want to get out and help people but you’re in so much pain.
I thought at one point there’s no point going to hospital as they can’t treat me.
However we had a charity fundraiser last week to help get some money to get life saving treatment abroad.
I got very tired very quickly though and my legs felt like solid concrete – I couldn’t physically move, I mean I’m in a wheelchair at the moment and using a zimmer frame.
I also had a full blown seizure there, like an epileptic fit there, and I stopped breathing at one point.
The seizures, heart rates, infection, all combined, can kill you; just yesterday there was someone I know who had Lyme disease who died.
Video: Heidi enjoying her fundraiser at PRYZM before her seizure
The treatment I need is stem cell therapy and IV therapy, the antibiotics and also immune boosting therapies which will mean so much if I can get out there.
It will mean I can get back to work and back to helping others.
It’s opened my eyes to other people’s suffering – it makes you realise others go through this too.
If I raise more than the amount needed, I want to donate it to children who are battling Lyme disease or who have cancer or anyone that’s suffering.
It means the world what everyone has done so far but we are a long way off to get treatment.”
