Hey my sweet peeps , I thought I would share with you the ray of hope I hold deeply inside my heart and soul…..Sam.
Who is Sam?…..well let me tell you xxx
When I was diagnosed with Stiff Person Syndrome in 2011…..I literally stumbled across Sam, via an SPS support group that was recommended to me by my leading medical professional at the time. It was like a weight had been lifted, to finally be able to talk to someone who was just like me……one in a million. Since this time, I have made some beautiful friends with SPS, who are more like family now…..I count my blessings every day for having such precious souls in my life. However, Sam has been an exception to the rule…….from the day we first spoke, he took me under his wing. He has made me fight when I feel like I am drowning, he has encouraged, supported and even protected me from the repercussions of this disease. As time past, Sam became my closet friend, a connection that I will never lose with him. I guess some people just come and go in our life’s …… but then there are those small few, for what ever reason, make a significant impact and stay forever……Sam is one of those people.
So why am I so proud of him? Well, I have watched Sam fight the ghost with everything he has….and more. I have never known someone so determined, positive and strong willed …..but also very stubborn lol . We have stayed in touch every day via calls, Skype or messages. Some days, one of us maybe feeling exceptionally poorly and unable to communicate……so to combat this. we just send a “K”……just so we know that the other is still fighting. You see Sam and I live pretty much on the opposite side of the world……I am here in the beautiful welsh valleys, where as Sam lives in sunny America. However, despite the distance, we are there for each other always. Sure we have helped each other through the worst of times, but have also shared the good times too. And isnt that what true friendship is ? to stay by each others side whilst taking the rough with the smooth. I remember one specific time when I was in hospital, I was having my fourth Plasma Exchange treatment , which left me pretty much lifeless …..my body completely shut down. Sam stayed with me the whole time, via my phone, he wrote continuously day and night, despite his own pain and battle he was up against…..so when ever I had the strength to open my eyes…..in some way he was there with me through his words, and I was never alone. He wrote about normal everyday things, trying to keep things light hearted…….but he also wrote words about believing in me and knowing that I had the strength to pull through. I will never forget those few days…..that is a true, caring friend…..when the going got tough, Sam didn’t leave me…..I guess it is for such reasons, that I will treasure his friendship always.
As you can see, Sam is pretty special….but not only to me…… to many other sweet people suffering with Stiff Person Syndrome too. He created an open group, to offer support, hope and a safe place for people with SPS to share their highs and lows. The open group “Stiff Person Syndrome” also welcomes friends, family and carers of those who are fighting the ghost, to give them the opportunity to share their concerns and fears too. I think sometimes, one my forget that it is not just the person who is fighting the ghost that is suffering, scared or hesitant about their future……but it also has huge implications on ones family and friends also…..its important that this is remembered. Sam has created a safe haven for many hundreds of people……and despite his own fight, he has never faltered to put others before himself……he really does make me so proud of him, I don’t think he actually realises how valued and highly thought of he is by so many people from all around the globe. I for one, from first hand experience, have endured the harsh reality of having almost everything stolen from me……for some reason, the ghost thinks it has the right to do so…..but I didn’t give it permission to steal my family, friends, my fairytale life as I once knew it. But Sam has always stayed, no matter what.
So why do I see him as a ray of hope? Not only have I watched Sam fight Stiff Person Syndrome……but I have also followed him through his journey, and watched him beat the ghost. What exactly do I mean? Well Sam is the 5th person in the world to have a Stem Cell Transplant as a treatment/cure for Stiff Person Syndrome. He was so determined to demolish his SPS…..he actually did it with great success. Even though this treatment is still trial based, so far it is producing very positive results…….this is the treatment I strive to fight for every single day. I have the most incredible team backing me, fundraising, planning, brainstorming…..their dedication, commitment and constant drive is beyond compare to any form of love I have ever felt before. They are my “One In A Million Team”……..souls I will hold in my heart for eternity. A Facebook page was created for me “One in a Million -Fundraising Page Nerrick Whittington” that now has 1,286 beautiful people supporting my campaign for the Stem Cell Transplant I so desperately need. I truly believe in my heart that I will achieve my goal….and be free of the ghost like Sam……but this would never be possible without the continuous hard work, love and determination of my “One In A Million Team”…….with all that I am I sincerely treasure you……you are the ones who are making the impossible, possible for me……you are the ones who are going to give my tots back their mummy……you are the ones who are going to let me chase my fairytale once more……you are the ones who are going to help me live. I love you xxx
I know the Stem Cell Transplant isnt a decision to be taken lightly…..but what other choice do I have? I have experienced every other SPS, treatment except Rituximab……but my Neurologist has his reasons for not trying it…..some reasons I understand, others I don’t, but right now, he knows I am willing to try anything. Rituximab is successful as a treatment for Stiff Person Syndrome in approximately 30% of cases…..which I think is worth at least trying. However, it can trigger the JCV which doesn’t have a proven antidote, so I can kind of see my Neurologists concerns with regards to this point. Additionally, it has been noted that due to the “complexity” of my disease, it makes my case extremely difficult to produce to the Panel, which is the situation anyone faces when undergoing this treatment. So what treatment have I tried already? firstly oral medications…..everyone that could possible assist damping the symptoms of Stiff Person Syndrome. Due to adverse reactions and the disease still progressing, Intravenous Immunoglobulin ( IVIg) was trailed, but I reacted badly. So the next step was Plasma Exchange, an invasive procedure and very tough on my body, but afterwards I had the most amazing results……until the 4th round, which caused detrimental effects. So at this present time, my treatment regime has been adjusted to make the IVIg more tolerable for my body to accept……which I must say, has recently shown some positive signs, even though my disease is still progressing. Hence, taking the leap of faith and making the decision to have the Stem Cell Transplant. Like I told my Consultant “I would rather die trying, than die from Stiff Person Syndrome”.
I know things may not work out for me as well as they have done for Sam, as everyone is different…..but I think it is definitely worth trying. At least I will know , I would have done everything possibly to beat the ghost and to be the mummy I once was….I owe it to my precious little ones to fight until I cant fight any more. If I am honest, I am scared of having the HSCT, but who wouldn’t be I guess. I am going into this with my eyes wide open….I have seen how this treatment is administered and it is going to be a rocky road for a few months, plus recovery afterwards. Sam and I tried to Skype regularly during his HSCT so I could see how he was feeling, and he would explain each part of the procedure he was going through……so at least I know what to expect. I must say, I was and still am in awe of Sam…..he handled the Stem Cell Transplant like it was a walk in the park lol. However, some days, I would look into his eyes, and despite his courageous smile and my encouraging smile back……I wondered on a few occasions if he was going to make it. However, Sam being the special guy he is, he fought so hard and finally breezed his way through it. I went from seeing my closest friend being tortured day after day by this dam disease…..to following his journey through his Stem Cell Transplant……..to now seeing him free of Stiff Person Syndrome. It really is quite breathtaking…..he is now himself again, everything the ghost stole he has back 🙂 Sam is now driving, walking, a fantastic daddy doing so many fun things with his precious tot (yet that’s nothing new Sam has always been an amazing daddy), shopping, having friends over…….he is living his life again 🙂 If anyone deserves a second chance, its Sam…….I truly am thankful for the day I stumbled across him…..he is a remarkable friend. And as he has come to know the saying from Wales “Love you lots like jelly tots” my sweet friend Sam lol 🙂
So this is why I am so proud of Sam……this is why he is my ray of hope……and this is why he will forever be my treasured friend. And as Sam would say “its your turn now Nerri, you just need to make it happen. After all, you are the one who always makes the impossible….possible” . I hope you are right my friend xxx