My precious daughter, Tarryn was diagnosed with RRMS some time ago (at least 5 years ago). She was 26 at the time, had been married for about a year, and looking forward to a normal, healthy life. The diagnosis was a shock, although when I think about it, I realise that Tarryn had, had MS for about 7 years before the diagnosis. I had taken her to a Neurologist because of pins and needles in her legs, and she was placed on a drip for 5 days (same treatment she now has for re-lapses), but her Neurologist just told me that she had an auto-immune disease, and once she left the hospital, that was that. I was so stupid, and ignorant and naive, I should have persued the matter, but I did'nt.
This disease, had changed all of us, obviously Tarryn most of all, but it has had this ripple effect on everyone who is blessed to be part of Tarryn's life. The biggest change is how it has affected Tarryn's confidence, and feeling of self worth. It breaks my heart that my beautiful, amazing daughter, feels less because of MS.
Tarryn's current Neurologist is heaven sent, he has been with her every step of the way since her diagnosis, and has told her that he will do whatever it takes to ensure that she has a normal life.
Tarryn is married to an amazing man, Patrique, who loves her unconditionally, and it determined to fight this with her.They have precious little girl, Shanah who is now 2 and a half, and has brought so much love and life into our family.
One of my major MS moments with Tarryn was last year in December. I was visiting her, and we were having a good heart to heart, when she told me that reality of the diagnosis had finally sunk in, and she had experienced a light bulb moment of the seriousness this disease that she had, and that there was no cure. It was sad to hear this, but it was a breakthrough moment, because I think she had just been going through the motions before, but now she had come to the realisation that she had to fight. She is also seeing a psychologist who is helping her to come to terms with it, and is slowly helping her to find her voice, and her self worth.
Our biggest challenge at the moment, is that her current medication, Copaxone seems to be having less of an affect in curtailing the relapses, and as a result she suffered 4 relapses and subsequent hospital admissions last year, each leaving new lesions and further damage. This in turn had her Neurologist investigate alternative options, the first choice was Tysabri, but after sending her bloods to Europe, we were informed that she was not a candidate due to her having the JCV virus.
The next option is Gilenya, which was launched in South Africa at the end of last year. They are now faced with the huge challenge of getting their medical aid to cover the full cost of the monthly treatment, which is about R20000.00 per month. This is an impossible amount for a family to afford.
My hopes and dreams, are for Tarryn, Patrique and Shanah to have a good life, together, that Tarryn grows old with Patrique, and sees her daughter grow into a wonderful woman. That Tarryn fights this disease, and becomes a voice for others. My hopes for myself is that I can assist in fighting this with Tarryn, that I can lend my time, talents, money etc to create awareness, and if necessary assist in fund raising to ensure that Tarryn gets the medication to assist her in her fight.