One In A Million...Stiff Person Syndrome

£60,824 of £300k goal

Raised by 1,430 people in 35 months
Nerrick Whittington  Abersychan Community, WLS

nerriberri.wordpress.com 

 




http://www.youtube.com/watch?v=FBIaCNoYS9c




 

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Update 54
Posted by Lindsay Clarke
2 months ago
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Will I ever break free from my nightmare???

The promise I made to my babies (my angels) .... I fight with each breathe. But I seem to be failing, and my promise to my precious children, melting away like snow flakes that slowly drift .
My babies have been without their mummy for far too long because of this disease... And not being able to share the magic of Christmas with them, is the worst pain any mummy can feel.

If only Wales would grant the Stem Cell Transplant for me .... It has already been a three year battle to get this far, but it would appear I am a trillion miles away from the hope of being given the chance to live .. But most importantly, to be give the chance to hold my babies in my arms....kiss their beautiful faces....and be their mummy once more
Fighting for my babies ... my angels xxx
praying one day mummy will be home xxx
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Update 53
Posted by Lindsay Clarke
13 months ago
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Hi my sweet peeps

I travelled to Sheffield 23/1/16, its now two days later and I am in the hotel still trying to recover from my journey, in preparation for a private appointment I have tomorrow.

My apologies if my video is difficult to hear, but I am struggling to breathe due to server fatigue and painful spasm.

The journey was excruciating . I am led here, just an out line of a shadow, of a girl who was once full of sparkle . However, I count myself fortunate as I have JJ with me ...... despite our past hurt and struggles in our personal life, JJ has been a tower of strength with his positivity, physical care and commitment in the fight to find me medical help and treatment ...... so i would like to say , from with in my soul, " thank-you JJ you have truly stepped up to the mark for me ..... without you this journey would not be possible. It could potentially be the beginning of the end of my suffering....... in turn give our babies their mummy back . Thank you for holding my hand through the pain, rocking me through my tears, my heart will forever hold your kindness, strength, determination and faith in me..... tight under lock and key, no matter what ".

I lay here, trying to focus on the beautiful memories in my life .... makes the pain a little easier to bare. I can still see JJ and I at 12 years old becoming each others best fiends, climbing trees in the park without a care in the world ...... I see us growing up and falling in love without realising it..... yes a lot of awful hurt has happened over recent years between us but that is irrelevant, as JJ is are here, with me now, continuing to help me fight. I can see in my mind, the last cuddle I had with my babies, almost feel their warm arms around me, smell the sent of comfort on their clothes, hear their sweet voices, and see their angelic smiles .
I can picture my mum, sister , nanny and grampy..... I am lighting up inside, as I feel their love, safety and gentleness, surrounding me, even though they are not here physically.

I have become so stiff and fatigued JJ has been doing everything for me, from holding my cup of coffee so i can drink .... encourage me to eat .... give my medication, carefully manipulate my muscles and joints to try and release the grasp of the ghost ..... take my weight so I am given the dignity to use the bathroom, help me clean my teeth ..... there's nothing he wont do for me, and for that I am blessed.

Some peeps are a little muddled regarding my disease and treatment progress. I wish I had all the answers , but even I am finding it difficult to comprehend. So I will try and clarify as best as I can.
The plan was for me to have a stem cell transplant in the summer of 2015. However, a certain neurologist challenged my diagnosis which put a hold on the SCT , that I was ready to begin with an exceptional haematologist who gave amazing support , along with my local neurologist. All that was required was the agreement of one more neurologist . Therefore, it has become a quest , to find a neurologist who is willing to support my case........ and make history , as I will be the first person in the UK to have a SCT as a potential treatment/remission/cure for SPS. This will be monumental for all SPS sufferers in the UK.
Concerning the ongoing trials around the world, the numbers are still minimal ( as its a one in a million disease) , but results are phenomenal ..... this is extremely encouraging , and more and more sweet peeps are choosing the SCT as a treatment option in the areas of the world that the trials are available.

My regular neurologist has halved my IVIG infusions, and completely with drawing them in March. He refuses to continue my regular treatment regime , despite my plea, yet my body is already suffering detrimental effects from the half decreased dose. The regular infusions were giving me a quality of life to a point. but now I am barely existing ...... so my fight for the SCT is all I have left to potentially give me my life back ..... give my babies their mummy.

love and hugs as always xxx


will i win my fight against the ghost ?
precious tots ..... i love you xxx
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Update 52
Posted by Lindsay Clarke
13 months ago
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With all my heart , i did not want to show you the pain behind my smile yet again, but a year down the line, i am still fighting the ghost behind closed doors. I only wanted peeps to see my sparkly smile, angelic face, to love me for who i truly am ..... not to leave or judge me for the war that is going on inside my body. However, the reality is, this is me, the girl no one sees ..... unless i am well enough to look like the sweet dancer i once was . How i miss her too ..... but that is who i am continuing to fight for.... the pretty little twirler, the mummy of three, the girl who dreams of becoming a solicitor with a life paved with rainbows.

So my nightmare continues , its very much real even with my eyes wide open. However, i will keep moving on , no matter how many stop signs or obstacles cause a diversion. Not only am I praying to find answers and treatment for myself, but i wish with my soul to offer hope to other sweet peeps like myself too

much love and fairy hugs to you xxx
The Voice Behind The Sparkly Smile xxx
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Update 51
Posted by Lindsay Clarke
13 months ago
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As I stood, out of my wheelchair ( Mid 2015), soaking up the sparkle of London at night , for a few moments before resting again ….. thinking of the fight ahead of the Stem Cell Transplant, I knew in my heart I could beat the ghost, and eventually help other suffers do the same …. my smile was relentless despite my on going inner pain. As each day I became stronger and stronger , with the support of amazing specialists and an excellent ongoing treatment regime ….. the aim of the final end goal, possible Cure/remission trial programme ( SCT ). Treatment ( IVIG) held me in a strong enough place to stand on my legs for short periods of time, breath , mange light, sound, touch, movement, controlled stiffness, less server spasms etc. Infusions every 11 days for 3 consecutive days , that in itself has not been easy by any stretch of the imagination, as my body finds it difficult to tolerate the infusions, the constant travelling , long exhausting days ( having to wake at 3am and not return home until evening …. only to repeat the same process the next day and the next ). It took a while for the treatment to start taking effect ( due to being left without a consistent treatment programme for so long) but when it did start showing positive signs of relief, , my goodness I didn’t stop smiling with twinkling laughter. The struggle of constant IVIG , certainly was worth every second for that latter relief that it gave . I began to live ( to a degree ) , to see the the world so beautiful just as I once remembered it. But very recently things have changed …. the Stem Cell Transplant has been challenged (as I will be the first in the UK to have this treatment for the one in a million disease, Stiff Person Syndrome) . My diagnosis questioned due to the severity of my symptoms, being noted as ” atypical ” ( but how is it possible to clearly ” fit the box” of symptoms or reaction to treatment , when the illness in question is one in a million ???? ) I know many sweet peeps from around the world battling the ghost, and no two of us are the same ….. the spectrum of severity various like any other neurological , autoimmune disease. This leaves one with the question , how on earth can doctors try and stereotype me ? tell me what is ‘normal ‘ and what isnt ‘normal’ of this unpredictable, miss understood disease ?. Nothing quite adds up any-more ….. my IVIG treatment is being removed , and I am now on a horrendous slippery slope of server pain, suffering and loss of dignity. I laid in the hospital bed ( 11/1/16), joints and muscles feeling like they were about to break, tare, snap, rip…… hunched with my knees to chest, begging for help, but no one listened to my stumbling words, trying to explain through my pain …. it seemed as though my file was closed in front of my eyes, as the tears fell pleading for help, begging for the continuation of the IVIG ( of which I was refused, despite visual deterioration with out the effective dose ….. all I have been granted is half my dose in 4 weeks time, followed by another of the same, then complete discontinuation. I am barley surviving now since my infusion has been cut by half over the previous 3 cycles ….. why am I being left to suffer??? ) . In the darkness my tears continued to fall whilst awaiting for an ambulance to take me home, and yet again left to suffer in silence. Please do not miss understand me, my struggle has not been relentless over the past year, but I fought as treatment every 11 days helped give me strength and dampen my cruel attack from the ghost …. until my Stem Cell Transplant began, which should have been completed in 2015. But now with treatment ( IVIG ) being removed ….. I am drowning in the claws of the demon once more, no matter how hard I fight. And anyone who truly knows me, will tell you I will never give up …. but its impossible to win the battle without sufficient medical help. My silent wishes for the Stem Cell Transplant seem less lightly to come true with each passing day xxx
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Help spread the word!
 10K total shares
Read a Previous Update
Becky Hill
26 months ago

I've donated and followed your updates have you considered cannibis oil (no thc ) research the findings there's a clinic in Amsterdam the results are astounding !x

+ Read More
Katherine Fraser
26 months ago

My heart goes out to you my darling girl. Keep fighting

+ Read More
Laura K
31 months ago

Register with the NHS to get into Dr. Kazmi's study or just contact his office. You have nothing to lose. He is Europe's foremost authority on HSCT. He trained all over Europe, Ontario, Canada and the Fred Hutchinson Center in Seattle, WA where all the SPS trials have been done already. He has a trial starting up and needs people. He believes in HSCT for autoimmune diseases and has performed the most procedures of HSCT in Europe if I'm not mistaken.

+ Read More
Sam Baar
31 months ago

Summer, I live in Arizona and the place you are talking about is a scam preying on desperate people. There are hundreds of these places popping up around the world. Legitimate HSCT is done through approved NIH trials in the US or Canada. There are a few other possibilities but these are the only two countries that have successfully done HSCT for Stiff Person Syndrome. I will personally do what I can to put Dr. Malan out of business and file complaints about his "research". People like this should be arrested for malpractice.

+ Read More
Kay Bowley
31 months ago

Wow! thats amazing everyone giving , look into this i am sure this operation can be done a lot cheaper like one lady had said , i hope this happens for you soon lyndsey, thinking of you and your lovely family, keep fighting kayx

+ Read More
Christine Fleming
32 months ago

KEEP STRONG. LET THE LOVE AND COMPASSION OF US ALL FILL YOU WITH HOPE AND STRENTH TO GET THROUGH THIS. KEEP STRONG.

+ Read More
Michael Yzzi
33 months ago

Marc: I feel so bad for you. I myself am frieghtend to death if I'm not able to move. YOU ARE SO BRAVE. I'll SHARE and TWEET this as much as I can. I really hope for you to be healed and won't have to go through that anymore. GOD BLESS YOU.

+ Read More
Summer Snow
33 months ago

I recently worked for a surgeon that does stem cell treatments here in Arizona. He definitely doesn't charge £300,000 for a treatment. More around £7-10,000. Please reach out to him, he is doing big things with the stem cell therapies here in the U.S. and Bahamas. Dr. Malan: www.mystemcelltherapy.com Tell him Summer referred you :)

+ Read More
Maz Brown
33 months ago

Keep strong my lovely. I am sharing and pestering as many people as I can. You are giving me strength with my own disability and when I'm in pain and moan about it I think about what you set going through and it gives me strength. I cannot wait to see you achieve your target and get the treatment you deserve x

+ Read More
Joan Reading
33 months ago

Nerrick, this story really touched me. I cannot comprehend the suffering you must go through daily. To lose control of everything except your mind frightens me. I wish you lots of funds, love, support and eventually health. God bless you. xx

+ Read More
Tracey Thorley
33 months ago

Breaking my heart watching your blog. I will donate and share for you. I cannot imagine your life. I hope beyond all hopes that you get well again not only for you but for your whole family. Gentle hugs xxxxx

+ Read More
Rachael Grive
34 months ago

http://www.freepressseries.co.uk/news/11135938.Talywain_mum_fighting__one_in_a_million__condition_appeals_for_op/?ref=mr

+ Read More
Sandra Yandell
34 months ago

lets raise awareness and find the help that Nerrick and I am sure many others out there are suffering in silence lets help raise funds to get Nerrick the help she needs

+ Read More

£60,824 of £300k goal

Raised by 1,430 people in 35 months
Created April 5, 2014
GV
£20
Gareth Vaughan
2 months ago

Continued best wishes x

LJ
£5
Lisa Jenkins
2 months ago
WT
£5
W Thomas
2 months ago

Sorry to hear of your continued struggles. Best wishes

£5
Eve Jones
2 months ago

Just a little towards helping you reach your goal x.

EB
£5
ELISABETH BOOTS
2 months ago

Praying you get the treatment you need very soon x

CT
£10
Chris Thomas
2 months ago

I hope you will be able to have your stem cell treatment soon. Keep fighting xx

LM
£5
Linda McDonald
2 months ago
£10
Anonymous
2 months ago
VR
£10
Val Roger
2 months ago
£5
Anonymous
5 months ago
Becky Hill
26 months ago

I've donated and followed your updates have you considered cannibis oil (no thc ) research the findings there's a clinic in Amsterdam the results are astounding !x

+ Read More
Katherine Fraser
26 months ago

My heart goes out to you my darling girl. Keep fighting

+ Read More
Laura K
31 months ago

Register with the NHS to get into Dr. Kazmi's study or just contact his office. You have nothing to lose. He is Europe's foremost authority on HSCT. He trained all over Europe, Ontario, Canada and the Fred Hutchinson Center in Seattle, WA where all the SPS trials have been done already. He has a trial starting up and needs people. He believes in HSCT for autoimmune diseases and has performed the most procedures of HSCT in Europe if I'm not mistaken.

+ Read More
Sam Baar
31 months ago

Summer, I live in Arizona and the place you are talking about is a scam preying on desperate people. There are hundreds of these places popping up around the world. Legitimate HSCT is done through approved NIH trials in the US or Canada. There are a few other possibilities but these are the only two countries that have successfully done HSCT for Stiff Person Syndrome. I will personally do what I can to put Dr. Malan out of business and file complaints about his "research". People like this should be arrested for malpractice.

+ Read More
Kay Bowley
31 months ago

Wow! thats amazing everyone giving , look into this i am sure this operation can be done a lot cheaper like one lady had said , i hope this happens for you soon lyndsey, thinking of you and your lovely family, keep fighting kayx

+ Read More
Christine Fleming
32 months ago

KEEP STRONG. LET THE LOVE AND COMPASSION OF US ALL FILL YOU WITH HOPE AND STRENTH TO GET THROUGH THIS. KEEP STRONG.

+ Read More
Michael Yzzi
33 months ago

Marc: I feel so bad for you. I myself am frieghtend to death if I'm not able to move. YOU ARE SO BRAVE. I'll SHARE and TWEET this as much as I can. I really hope for you to be healed and won't have to go through that anymore. GOD BLESS YOU.

+ Read More
Summer Snow
33 months ago

I recently worked for a surgeon that does stem cell treatments here in Arizona. He definitely doesn't charge £300,000 for a treatment. More around £7-10,000. Please reach out to him, he is doing big things with the stem cell therapies here in the U.S. and Bahamas. Dr. Malan: www.mystemcelltherapy.com Tell him Summer referred you :)

+ Read More
Maz Brown
33 months ago

Keep strong my lovely. I am sharing and pestering as many people as I can. You are giving me strength with my own disability and when I'm in pain and moan about it I think about what you set going through and it gives me strength. I cannot wait to see you achieve your target and get the treatment you deserve x

+ Read More
Joan Reading
33 months ago

Nerrick, this story really touched me. I cannot comprehend the suffering you must go through daily. To lose control of everything except your mind frightens me. I wish you lots of funds, love, support and eventually health. God bless you. xx

+ Read More
Tracey Thorley
33 months ago

Breaking my heart watching your blog. I will donate and share for you. I cannot imagine your life. I hope beyond all hopes that you get well again not only for you but for your whole family. Gentle hugs xxxxx

+ Read More
Rachael Grive
34 months ago

http://www.freepressseries.co.uk/news/11135938.Talywain_mum_fighting__one_in_a_million__condition_appeals_for_op/?ref=mr

+ Read More
Sandra Yandell
34 months ago

lets raise awareness and find the help that Nerrick and I am sure many others out there are suffering in silence lets help raise funds to get Nerrick the help she needs

+ Read More
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