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Help Helle beat ALS

£40,001 of £61,000 goal

Raised by 357 people in 10 months
“There is no doubt - you have ALS”. This was the heartbreaking message I received on my 47th birthday this June. How do you convey to your 3 young children that you have less than 2 years to live according to the doctors?

ALS is a Motor Neurone disease, it has no mercy doesn't discriminate by sex nor age. Made tragically famous by the late Professor Stephen Hawking, who defied the doctors and lived for 55 years with ALS - however, most patients are given less than 2 years. Whilst your brain never deteriorates, ALS attacks all physical functions until you’re completely paralysed. Eventually you cannot even breath.

I have always been fit and a healthy eater, running once or twice a week. I have done bike rides for charity events raising money for heart research and in October I walked a marathon, raising money for mental health. But in December I was confused to find that I couldn’t run further than 200m. I scolded myself for becoming so unfit! Now I walk unsteadily, no farther than 100m. The stairs in our home are my Mount Everest. I wake every morning still ill, still frightened, and dread discovering further deterioration.

According to doctors I will never see my children grow old, never see them finish school, start a career and eventually start their own families - because there is no cure that they recognise. In July, James, my husband, broke the news to our three teenage children, Oskar, Sara and Isabel. Having to tell your children that they may be losing their mother is the hardest thing. Having them slowly watch me waste away makes it even harder.

But I can’t give up - I refuse to give up!

Luckily there are some positive cases, patients who have managed to arrest the illness and improve their quality of life by removing all the toxins and bacterias from their body and boost their immune system. This scientific paper describes one of them . My immune system is currently lower than someone who is receiving chemo and my levels of toxins are sky high. So my husband and I fight together to halt this terrible disease by researching options, preparing nutritious meals, administering medicine, taking 30 plus supplements and driving hours each day to receive intravenous treatments. We are replicating the patterns of those who defied the doctors. However, this leaves a household of 5 without any income.

But we know it is now or never if we want to beat the doctors’ dire verdict. So in the past months I have had my metals fillings removed, replaced the lead pipes and mould damaged plaster repaired in our family home. And we’ve just started importing a new ALS drug from Japan, at a considerable cost, which needs to be administered intravenously every day for two weeks of every month. It’s not a cure but promises to slow down the progression. None of this comes for free nor is covered by my Lloyds health insurance nor NHS. It costs us £3000 each month.

One of the most powerful treatments on my path to healing is a 3-week treatment at a clinic in Frankfurt this November. This will help me clear the toxins and restore my immune system and cells. This is a critical step before I can turn my attention to stem-cell therapy, which has shown promising results for several ALS patients.

As you can imagine, we are running down our savings. The Infusion treatment will be £25,000. To do this and to continue monthly treatments for the next year will be a staggering £61.000, which is beyond us.

I have always found it difficult to ask for help - but I am terrified that I may be running out of time. I therefore beg you – please – help me raise the initial £25,000 for the treatment this November that I need to turn this around and then anything additional towards the £3000 a month will ensure I can continue my treatments beyond Infusio. Even the smallest donation will make a world of difference to me and help me live longer to see my children grow up.

 

Yours and forever grateful, Helle Hobbis

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“Der er ingen tvivl, du har ALS.” Jeg fik denne hjerteskærende besked på min 47-års fødselsdag juni i år. Hvordan fortæller man sine 3 børn, at deres mor ifølge lægerne max har 2 år tilbage at leve i?

ALS er en ubarmhjertig sygdom, der hverken kender alder eller køn. Et velkendt eksempel er Stephen Hawking, der dog levede 55 år med ALS, mens de fleste patienter i gennemsnit lever mindre end 2 år. ALS berører ikke hjernen, men angriber alle fysiske funktioner i kroppen indtil man er helt lammet, og til sidst ikke kan trække vejret.

Jeg har altid være i god form, har spist sundt, og dyrket sport en til to gange om ugen. Jeg har deltaget i flere velgørenhedsevents, senest i oktober sidste år hvor jeg gik et maraton for at samle penge ind til psykisk sundhed og trivsel. Men i december havde jeg pludselig problemer med at løbe og kunne ikke holde fast på ting. Trappen i vores hjem føles nu dagligt som at bestige Mount Everest. Jeg vågner hver morgen med rædslen om at have mistet førligheden yderligere.

Som ALS-offer skal jeg ifølge lægerne forberede mig på ikke at opleve mine børn færdiggøre deres uddannelser for ikke at tale om at opleve dem blive voksne og stifte deres egne familier. For der findes ingen officiel behandling. I juli fortalte min mand, James, den frygtelige nyhed til vores tre teenage børn, Oskar, Sara og Isabel. Det gør kun tingene mere ubærlige, at de kan se, hvordan deres mor langsomt mister førligheden et legeme ad gangen.

Men jeg vil ikke give op - Jeg nægter at give op!

Til alt held, findes der få, men opmuntrende, tilfælde, hvor andre ALS-ofre har fået bremset udviklingen, og forbedret deres livskvalitet ved at fjerne diverse bakterier og toksiner i deres krop, og booste deres immunsystem – denne videnskabelige artikel beskriver et af disse tilfælde . Mit eget immunsystem er svagere end hos patienter, der modtager kemo og mit niveau af bakterier og toksiner i kroppen er meget højt.

Hver dag kæmper min mand James sammen med mig for at bremse fremdriften af den modbydelige sygdom. Ved hjælp af flere timers daglig research kopierer vi fremgangsmåden for de få ALS-patienter, der har overvundet lægernes dom. Derfor kører min mand mig dagligt lange distancer til alternative behandlinger og hjælper mig med at forberede mine specielle og dyre måltider samt mit daglige indtag af 30+ forskellige piller i alle former fra fast til flydende. Dette betyder også, at vi som en husstand på 5 mennesker ikke har nogen indkomst.

Vi ved, at det er nu eller aldrig, hvis vi skal overvinde lægerne barske prognoser. Så i de foregående måneder har vi iværksat omfattende forbedringer på vores hus for at fjerne alle kilder af mug, giftige metaller osv. Oveni det bruger vi godt 25.000 kr. om måneden på mine behandlinger, da der ikke findes nogen offentlig støtte til hverken medicin, sygeplejersker eller redskaber. Behandlingen indebærer blandt andet, at vi importerer et nyt ALS-præparat fra Japan, der har vist lovende resultater.

En helt afgørende behandling for mig er en 3-ugers behandling på en privatklinik i Frankfurt. Behandlingen vil fjerne de giftige bakterier og toksiner fra min krop, samt genoprette mit immunforsvar. Dette er et afgørende led i min behandling, før jeg som næste skridt kan modtage stamcelleterapi, der har vist afgørende resultater på ALS patienter.

Som du måske kan forestille dig, er vi ved at løbe tør for penge. Behandlingen i Frankfurt koster 210.000 kr. Lagt sammen med mine måndedlige udgifter til øvrige behandlinger og medicin på 25.000 kr. er dette samlede beløb uden for vores økonomiske rækkevide.

Derfor beder jeg om din hjælp, selvom det er meget fremmed for mig at bede andre om penge. ALS-angrebet gør så mange frygtelige ting ved min krop og mit liv, at jeg føler mig nødsaget til at ty til fremmede metoder. Dette er en af dem. Selv et meget lille beløb, som du måske ikke synes vil ændre verden, kan meget vel være med til at ændre mit liv og min verden. For jeg vil ikke give op. Mest af alt for mine børns skyld.

 

Af hjertet tak!

Helle Hobbis
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Hi beautiful people,
It's been a while since my last update, lots of things have been happening.
My immune system, as well as the level of infections and bacteria in my body, has improved tremendously thanks to the treatments I've received in Germany and all the daily treatments we continue to do. So once again, thanks for your kindness and support – it means everything.
However, despite my positive progress, I have had a blood clot (pulmonary embolism) 3 weeks ago. Luckily, my body was strong enough to see me through it and I'm now recovering from the setback. Fortunately, I am able to continue my treatments to keep my body strong and prepare it to receive intense stem-cell therapy to repair my lost mobility later this year.
I, James and the kids continue to be forever grateful for all the kindness, love and support we are receiving ❤️❤️❤️
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Kære alle,
Det er et stykke tid siden jeg delt en update og der er sket meget siden da.
Mit immunforsvar er, sammen med niveauet af infektioner og bakterier i min krop, blevet meget bedre takket være de behandlinger jeg modtog i Tyskland, og de behandlinger jeg modtager dagligt. Endnu en gang tak fordi at i har gjort det muligt for mig at forsætte min kamp – det betyder alt.
På trods af min positive fremgang, blev jeg desværre ramt af en blodprop i lungerne for 3 uger siden. Heldigvis har min krop været stærk nok til at klare det, og jeg er i fuld gang med at komme mig ovenpå den uhyggelige forskrækkelse. Det sætter gudskelov ikke en stopper for at jeg kan forsætte mine daglige behandlinger, så min krop kan blive rask nok til at gennemgå en intens omgang stamcelle terapi senere på året, med det formål at regenerere den tabte mobilitet.
James, børnene og jeg er forsat evigt taknemmelige for jeres omsorg, kærlighed og hjælp ❤️❤️❤️
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Dear family and friends I am now back from Germany recovering and waiting for my stem cells to heal my body. It was a very intense 2 weeks but I am sure it is a key part of my healing journey. As part of the programme I will be going back to Germany for further treatments and a very targeted stem cell procedure sometime in late January
I am now back on my tough treatment programme including the Japanese drug which is administered via daily IV’s 2 weeks on 2 weeks off.
Thank you so much for making Germany possible for me and for helping to ensure that I can continue all the medications back here in the uk.
I, James and the kids will be forever grateful for all the kindness, love and support we are receiving ❤️❤️❤️

- - - - - - - - - - - - - - - - - - -
Kære familie og venner ❤️ jeg er nu tilbage fra Tyskland efter nogle intense uger, men jeg er sikker på at det er en vigtig del af min healing. Nu venter jeg på at mine nye stamceller skal begynde at hjælpe mig, inden jeg i Januar tager tilbage til Tyskland for anden del af programmet som også vil give mig endnu en stamcelle behandling
Jeg er nu tilbage til mit strenge hverdags program samt den specielle medicin fra Japan, som bliver administreret via daglige IV’s, 14 dag på og 14 dag fri..
Tusiende tak fordi i gjorde Tyskland muligt for mig og hjælper til at jeg kan forsætte med alle mine behandlinger her i London ❤️
James, børnene og jeg vil være foreviget taknemmelige for jeres omsorg, kærlighed og hjælp ❤️❤️❤️
Feeling hopeful
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God morgen til alle jer dejlige mennesker ❤️

Wow - hvilken uge! Tænkte i måske har lyst til at høre hvordan det er gået.

Har indtil videre fået 10 immune tilskud i balden , mere end 20 IVs, gået i sjove bukser til lymfatisk dræning, haft 5 infrarød-sessioner for at forbedre mine mitokondrier, 2 bio resonans celle behandlinger, en masse specifkke tests og en mindre stamcelle behandling.

Nu er det tid til at komme mig ovenpå alle de behandlinger før det går løs igen mandag - og den store stamcelle behandling torsdag.

Alle de ansatte er dybt kompetente, og tager sig rigtig godt af mig. Føler mig meget komfortable ved deres behandlinger.

Endnu en gang tusinde mange tak for jeres hjælp - tak fordi i har fået denne behandling til at ske ❤️

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God morgen to all you lovely souls ❤️

Wow, what a week, thought you might wanted to know what I have been up to.

So far I have had 10 immune modulations shots in my bum , more than 20 IVs, worn funny trousers for lymphatic drainage, had 5 red light sessions to boost my mitochondria, 2 bio resonance cell energy treatments, a bunch of additional tests to direct treatments and then the mini stem cell treatment.

Now ready for a rest before we start again on Monday, with the big stem cell treatment scheduled for Thursday.

They are all so very competent and lovely, feel very safe and positive being here.

Love to you all and thanks again for helping me to make this happen❤️
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Hello beautiful people, just wanted to give you an update from my journey to recovery. Because of you, because of your kindness, because of your love and support I am now at Infusio in Frankfurt for my special treatments which are designed to remove viruses, bacteria’s, boost my mitochondria and rebuild my immune system. I will have several infusions and treatments everyday.
My beautiful kids are at home being cared for by their grandparents and James is here supporting me every step of the way ❤️
Today is a big day as I will receive my first stem cell therapy which is being prepared from a blood draw this morning
I feel so excited and very great full to be here, to be given the chance to improve my health and stay around longer for my kids, James and my loving friends and family. When I come home I will be able to continue my special treatments from Japan. So thank you thank you with all of my heart
Trying to relax through the infusions!
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Raised by 357 people in 10 months
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