One In A Million...Stiff Person Syndrome
I sincerely thank each and every individual for blessing me with this gift......the gift of life.
Costs spiralled out of control over the past 3 years (as the Welsh NHS would not help with anything concerning HSCT).Thus , yearning for this dream, and knowing that a stem cell transplant was my last and only hope .... together, with your generosity combined with the heartbreak decision of selling the family home, accumulated enough funds to finally complete the HSCT process. I thank you deeply with my heart, soul and spirit for giving me a chance to live, but more importantly, giving my babies their mummy back.
I am now 11 days at the beginning of post recovery (still not home, but will be very soon I hope), I still have a very rocky road ahead to fight......but one that hopefully will lead to a bright and beautiful future.
Sending all my love, fairy hugs sprinkled in golden fairy dust and sparkly smiles .
(This fundraising account will shortly be deactivated ...... I just need to figure out how , as I did not set it up) xxx
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
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
Lindsay sweetheart I am a 29 year old SPS sufferer in Scotland. I am trying to get medical marijuana legalised in the UK as there is evidence that it could help improve and potentially save the lives of sps sufferers as well as other progressive nuerological conditions and cancer patients. Would you mind if I put your name in the petition I am writing in to put into change.org as an example of how sps affects us? I will share your page on Facebook, my family and friends see how sps affects me so hopefully you will raise the money you require. My love and prayers are with you beautiful girl, I understand what you are going through. All my love xxx
My heart goes out to you my darling girl. Keep fighting
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.
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.
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
KEEP STRONG. LET THE LOVE AND COMPASSION OF US ALL FILL YOU WITH HOPE AND STRENTH TO GET THROUGH THIS. KEEP STRONG.
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.
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 :)
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
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
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
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