Huckins Family Appeal

05/03/2016

The wonderful Nichola Seal is helping the Huckins Family Appeal once more with a 'Dance-a-thon' supporting ourselves, and another sufferer, Claire Diss, who was originally misdiagnosed with . Nichola herself is still recovering from so this challenge she has set herself will not be a walk in the park by any means. Please take a moment to wish her well & support her in her challenge by making a small donation if you can :-) x

https://www.gofundme.com/nicolalyme

I'm in recovery from Chronic Lyme disease. Thanks to years of private treatment from the USA I've gone from being severely incapacitated, with difficulty walking or a total inability to walk, severe fatigue, pain, cognitive dysfuntion and a host of other symptoms, to being pretty much fully funct...

19/08/2015

At the clinic this week it has been the turn of Joshua, aged 12 and Dexter, aged 5, to be seen by the doctors.

Joshua is at very difficult age where the symptoms of Lyme Disease can be heightened with the onset of puberty. Unfortunately, they do think that it’s Joshua that is more the cause for concern, out of the 2 boys. Babesia, where the patient can suffer from malaria-like symptoms, and Bartonella, a bacteria that lives primarily inside the lining of the blood vessels, is at the top of the list for testing. These are two of the more commonly known co-infections of Lyme Disease with 32% of patients diagnosed with Babesia and 28% with Bartonella. The medication regime is quite extensive with herbal med trials, and also help with his adrenals.

Dexter they feel is not too bad, and there is the possibility it’s just because he is a live wire! The doctor does feel that babesia may be a little in play, so has prescribed a herbal trial for him, but it’s hard to tell for sure, with him being so young, it may be a case of sit and wait, but in the meantime he has been tested to see if anything obvious shows up. Both boys have also been tested for mycoplasma, and chlamydia pneumonia.

Although the boys have always shown symptoms of Lyme Disease, the tests available in the UK are not accurate or reliable, and the results dismissed by the NHS. Joshua & Dexter have now both had the IGeneX testing, which is from the state of the art clinical & research testing centre for Lyme Disease and associated Tick-borne illnesses, based in the USA. The full results from these tests will not be available for approximately 6 weeks, to allow the blood to be cultured, but will provide the most complete data for the doctors to know the way forward for treatment of the whole family. Quite a traumatic time, but both Joshua & Dexter were incredibly brave throughout their appointments. :-) x

17/08/2015

A HUGE BIG thank you to Andi who has just completed a month dressed as a minion for the Huckins Family Appeal :-) He has raised an amazing £2567.78 for the appeal, what a super star! :-)

Although his minion mission has now been completed, donations can still be made, by clicking on the link in the comments field below, and would be very much appreciated :-) x

14/08/2015

Just a quick update for now, more will be updated later today, when we have more news. The costs for treatment are really mounting up in America. This is not just treatment for Adelle remember, but the clinic is treating Joshua, Kaitlyn & Dexter, the whole family are effected by Lyme Disease. So far the bill this week is at $2370, which equates to just over £1518. Everybody has been amazing, and really supportive of the Huckins Family Appeal, to get the whole family across to America has been a fantastic feat. One of the many people that has made this journey possible has been Andi the Minion. Since 15th July, Andi has been living life dressed as a minion, that's going to work, shopping, socialising etc. always in character! His month long minion life ends tomorrow, please dig deep & pop a pound or two onto his fundraising page, if you can, to push the coffers up, and make sure the whole family are able to receive the best possible fighting chance for treatment, whilst they are out in America :-) Thank you all once again for your continuing support, and good wishes :-) x http://www.youcaring.com/huckins-family-appeal-386175

I will be dressed for as many hours as possible between the 15th of July and the 15th of August. I will be minioned up for work, shopping, for gigs, for socialising, everywhere possible! The reason? Can be found here.... www.huckinsfamilyappeal.org.uk

13/08/2015

So yesterday it was the turn of 10 year old Kaitlyn to see the doctor at the clinic in America. We believe that Kaitlyn contracted Lyme Disease congenitally, whilst Adelle was pregnant, she was diagnosed several years ago, along with a number of co-infections relating to Lyme. Despite all this Kaitlyn is a very talented gymnast, and was scouted earlier this year by Team GB, she now trains regularly, as part of the team, and is a future medal contender.

Kaitlyn’s appointment lasted for 2 hours 30 minutes, and went well. A thorough examination was taken, and a detailed symptom list was noted. Kaitlyn also had her blood looked at under the microscope, and her blood looks really quite good, although her blood is slightly thick too, but nothing too much to be concerned about.

The doctor could feel her liver was quite enlarged, and he couldn't push in around it as it was too painful (but the liver doesn't have any pain receptors so it's the swelling around her liver that is causing other organs to give her the pain she feels). This is what’s causing her sickness, and eating problems.

The doctor suspects that Kaitlyn is suffering with a coinfection called Bartonella, he has come to this conclusion as all her current symptoms fit with this, and he has therefore prescribed her with a challenge medication to initially start on. This will see her with a few drops administered daily, and if her symptoms increase, and it then stirs things up, then he is completely on the right track, if it does nothing, then we start over again (no testing is totally 100% accurate for Bartonella) but this confection does match all of Kaitlyn's symptoms.

Kaitlyn will need to start on magnesium, and she also has a zinc deficiency, but they are not going to tackle that at the moment, the doctors are just concentrating on the major symptoms first. Kaitlyn was extremely brave throughout her appointment, and the staff just loved her! What an absolute star we're sure you will all agree :-) x

12/08/2015

Well some really good news to report.........after 14 months Adelle has had her PICC Line removed!!! :-)

For those that are not familiar with a PICC Line, or to give it it's full name, a peripherally inserted central catheter, this is a long, thin, flexible tube that it is inserted into one of the large veins of the arm near the bend of the elbow. It is then threaded into the vein until the tip sits in a large vein just above the heart. The catheter is then used to administer Intravenous (IV) fluids, drugs or therapy direct into this large vein straight to the heart :O

When the line was fitted, under local anesthetic, last year, it was an extremely distressing & traumatic experience for Adelle. Yesterday, after the final infusion of chelation therapy, the line was removed, and this time they were no tears just elation, followed by a happy dance! :D x

11/08/2015

The family arrived safe & sound in America after a very long journey from the UK. Allowing for a few days of rest, Adelle had her first appointment with her doctor yesterday.

Adelle feels so safe & happy to be back in the clinic, they understand, questions are answered, and any doubts she may have had are given instant reassurance. This initial appointment lasted for a total of 2 hours!!

The doctor is really really impressed with the improvements that Adelle has made since June, when he last treated her at the clinic. He thinks that the Lyme has dampened right down, but this has allowed other things to surface, apparently this is quite normal. He looked at her blood under a microscope, and her blood is incredibly, incredibly thick, lots more fibrin, this in turn is not allowing the blood to flow freely. Also her red blood cells are stacking together this time, and cascading like glaciers, last time they were just sticking together through fibrous strings. So to address this her doctor has put Adelle back on the natural blood thinner serrapeptase, and also upped her dosage.

He is now working on Adelle’s breathing problems, but it's a bit of a jigsaw as he needs to rule out one thing at a time. With her immune function being down it could be a number of things so they are ruling out one thing at a time. He is starting with the most obvious, a build-up of mould toxins in her nasal cavity, causing nasal drip, which is, in turn going to her lungs, but her peak flow is normal so he's not sure this is the answer. The other option is Babesia, which is known to cause lung problems, but can be tricky to treat! His best guess, and which he does believe to be the cause is the fact that she has so much metal in her mouth. He thinks she could have an infection in her jaw, in her bone as she does get a lot of jaw pain, and that would cause nasal drip and breathing problems. The reason he's not jumping feet first into the last option is that Adelle would need to see an orthodontist in America to take a good look at her teeth, probably then have to have them removed, and the jaw bones cleaned, yikes !!!!!!! And that's very pricey too!!!!! So for now Adelle is going to be sent to the dentist at the clinic for a scan just in case it needs to be looked at, but he's trying to rule out this option!

Also, her thyroid is enlarged so she is having having blood tests to see what is going on there. The doctor noticed when he looked at her blood she has had a lot of white cells (too many) so he is testing that too! The doctor has also put Adelle on a glutathione nebuliser, which is an effective treatment for a variety of pulmonary diseases and respiratory-related conditions, which will help greatly with her lungs and breathing. This has already made a difference to Adelle & the doctor has recommended using the nebuliser at home, which at a cost of $100 will be worth spending the money on. Adelle will be starting Chelation Therapy today, this is used to remove toxic metals such as lead, arsenic, and mercury from her body which can impair circulation, and create a host of other health problems.

The children are booked in for appointments next week, but the doctor is concerned about Kaitlyn so her appointment has been brought forward, and she will now be seeing Adelle’s doctor tomorrow.

So good news, and bad news, in general they are heading in the right direction with the safety & security of the fantastic health care professionals looking after them in the US :-) Thank you for your continued support :-) x

07/08/2015

First of all it’s been a while since we have updated the appeal page, so apologies for not keeping you all updated with the Huckins Family Appeal. There has been so much going on behind the scenes, more of this will be revealed over the upcoming months, but for now some very amazing news. Adelle, Rob, Joshua, Kaitlyn and Dexter are currently sat on an airplane, awaiting take off to America for treatment!!! This has been pencilled in for over year, but as time was pressing on it didn’t look like they were going to make the trip back to the clinic that treated Adelle in June of last year. Funds were very low, and it therefore looked like the trip was going to be postponed. With a group of great new friends, they all know who they are, they have rallied around, and successfully raised enough money for flights & accommodation to get the family out to America, an outstanding feat! The family cannot thank these wonderful people enough, you are all amazing, as is everybody else that continues to support the appeal. They are still somewhat short of the funds to treat the whole family, whilst they are out there, but there is still some fundraising going on which should ensure that all 3 children are treated. We will keep you updated with treatment & progress, as soon as we have any further news from America. Thank you to everyone that has made this trip possible, and for the many best wishes, genuine love & support :-) x

07/06/2015

In a couple of weeks time, on , a 12 year old boy will be running 3km to raise much needed funds for the Huckins Family Appeal. Liam will be starting his 3km trek from Greenfield Community College (County Durham) on Sunday 21st June. Thank you so much Liam, you are a little star! :-) Please support this generous act of kindness, from such a young person, and wish him the best of luck with his run :-) x

http://www.youcaring.com/huckins-family-appeal-364753

On Fathers Day, Liam will be running to raise much needed funds for the Huckins Family Appeal. He will start his 3km treck from Greenfield Community College, Newton Aycliffe, County Durham. DL5-7LF. Please show your support for this very kind gesture and help him make this a great success! A bit...

06/05/2015

We may be quiet on at the moment, but there is still a lot going on behind the scenes at the Huckins Family Appeal :-) One of our wonderful supporters is kindly supporting our cause with a fundraising across the River Tyne in . This daring feat takes place on 01/11/15, starting from the Newcastle side, 30 metres above the River, and travels diagonally across the River Tyne for 230m, before finishing at HMS Calliope on the Gateshead side, wowza, a very brave lady! :O If you can help in donating, even if it's a small amount, that would be fantastic :-) Thank you in advance for your continuing support and for helping us to raise much more of :-) x

http://www.youcaring.com/medical-fundraiser/lynda-s-zip-wire-to-help-the-huckins-family-fight-lyme/349862

On the 1st of November, I will be taking part in a zip slide from the Tyne Bridge in Newcastle to raise much needed funds for the Huckins Family Appeal. The Tyne Bridge in Newcastle is an iconic structure and Zip Slides UK has been delivering successful zips from the bridge for the past 6 years....

28/04/2015

Ahoy, me Hearties! :-) The organisers of Pirate Festival have kindly offered to donate funds to the Huckins Family Appeal from collections held on Saturday 4th July, at this years event, yo ho ho :-) But it's all hand hoay for to help with collecting our much needed b***y, can you help? If your answer is aye & you're able to help collect pieces of eight, please drop us a message as soon as possible, thank you in advance :-) x

24/04/2015

Awareness report shown yesterday morning on the BBC, worth a watch ;-) x

http://www.bbc.co.uk/news/health-32429228

A research project is being launched today as scientists try to find out more about ticks.

13/04/2015

A major social media campaign is shining the light on Lyme Disease, and now major celebrities are getting involved.

12/03/2015

"It's very, very political. It's sort of where AIDS was 30 years ago. Sooner or later the dam's going to break and it's going to come out that we're not acknowledging and diagnosing this properly."

http://www.delta-optimist.com/news/long-road-leads-to-lyme-for-ladner-woman-1.1788394

It seemed innocent enough. In March 2009, Elaine Crossley was working in the yard with her husband Bill Wheeler. Later that day, she noticed a bite on her leg. It didn't hurt and it wasn't itchy. . . .

03/03/2015

Thank you to the lovely ladies at St Thomas Parish Church, New Marske for making the Huckins Family Appeal so welcome last night at our talk. We spoke to the group for an hour or so, handed out leaflets and wristbands to those that attended. Although this was an awareness talk we were kindly given £44, which was very kind and totally unexpected. Thank you for your generosity and inviting us along :-) x

01/03/2015

Some of the leaflets the Huckins Family Appeal will be handing out tomorrow evening at a awareness talk for a group of ladies. If we can stop even just one person from going through the suffering, the lack of recognition of an invisible illness and the hardship that Adelle, Rob and their 3 children are going through, then that will be a very worthwhile thing to do :-) x