Advocating for my father, myself, and my children's future

I was 7 years old when I was invited to attend my first father-daughter dance, a rite of passage for many young girls. I remember standing in our living room, twirling in the new dress we had bought, feeling like a princess. That’s when I was told we wouldn’t be able to attend. My young mind could not comprehend why my father, who was living with secondary progressive multiple sclerosis, could not take me to the dance. I wouldn’t hear the words “multiple sclerosis” for the first time until a year later as an eight-year-old standing in our family kitchen. To this day, tears fill my eyes as I picture the dance invitation and think about my own daughter attending her father-daughter dance. The only difference is that today I am keenly aware of the struggles of MS – as I too was diagnosed with MS just one month after my daughter’s birth.

My father’s symptoms began in 1978, but with the lack of MRIs or therapies for MS, he went undiagnosed until 1983. In the early 1990’s the first disease modifying therapy came onto the market, but the disease progressed quickly, and by 1996 he was using a wheelchair permanently. At the age of 19, just three years later, I experienced my first MS attack. Years later, neurologists found over 10 lesions on my brain and I too heard the words, “You have MS,” just like my dad had 43 years before me.

As the mother of a young daughter (with a second child on the way!) I can’t help but wonder about the chances of her hearing those words from a doctor as well. Without any centralized data about the number and type of people like me around the country who have MS, MS researchers have had trouble verifying whether MS is on the rise, and have difficulty following up potential leads to environmental or viral triggers that may increase chances of developing MS. This year, the U.S. House and U.S. Senate have introduced the Advancing Research for Neurological Diseases Act (H.R. 292/S. 849) which bridges the gap between data and research for diseases like MS. The neurological data bill will create a nationwide system for tracking the incidence and prevalence of neurological diseases, which could one day lead to a cure.

As a child, my father’s neurologist told my family that I had a 1% higher chance of being diagnosed with MS because of my father’s diagnosis. My current neurologist tells me that my children have a 1 in 40 chance. Without research we simply cannot know. There are no words to describe the lengths any mother will go to to protect her child, and by supporting the Advancing Research for Neurological Diseases Act, I am protecting mine. I want my children to grow up in a world where the phrase “you have MS” is a thing of the past. I want my children to never be afraid of MS or of visiting a neurologist. I want my children to become strong advocates for their mom, for their grandpa, and for everyone affected by MS.

As we prepare to welcome our second child into the world, the words “multiple sclerosis” are constantly on my mind. But rather than letting fear take over – I’m becoming more passionate than ever about fighting this disease, finding new ways to advocate for change, and fundraising so that MS research is supported across the country. Will you join me?


Take action today by asking your U.S. Senators and U.S. Representative to support the the advancement of MS research. By sending your action alert, your voice will be added to the over 4,000 MS activists who have contacted Congress about the Advancing Research for a Neurological a Diseases Act this year.

Tags Activism & Advocacy, Parenting      10 Appreciate this
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Rebecca

Rebecca Kuchar

Rebecca is a passionate MS advocate who joined the MS movement 28 years ago. Since 2005, Rebecca and her team, The Fighting Shamrocks, have raised over $100,000 for MS research and programs through the National MS Society in Michigan. As an active person with MS, daughter of person with MS, mother, wife, and professional; she believes in the importance of community involvement and advocacy for people with multiple sclerosis worldwide. Rebecca and her family live in Michigan. 

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    27 Comments

  • Shelly   May 22, 2015 11:30 AM
    Like you, I grew up with a father that had MS. I received my diagnosis of MS four years ago. I never understood why he was always taking a nap, now I do.
  • Natalie Walkeden   May 22, 2015 11:34 AM
    This post really is close to home for me as my son's father has ms and his own father and paternal grandmother also had it. I'm terrified of my son, who is 7 getting it later on. Hearing there is a 1 in 40 chance is not very encouraging. I'm just really scared for his future and his dads.
  • Shelley Stafford   May 22, 2015 12:42 PM
    Your story was so similar the mine, but sadly, I was not able to grow a family due to my and my father's MS. I also have two paternal female cousins with MS. For these reasons, we made the personal choice not to have children.

    After 20-yrs being Dx'd with MS, my first exacerbation at 17-yrs old but not Dx'd until I was 23-yrs old, I was now faced with Secondary-Progressive MS. Searching for a clinical trial for this stage of MS, I tested positive for the HLA haplotype DR2 B and T cells dominate in patients with MS, and was approved to participate for the MBP8298 study at University of Colorado Hospital in 2009.

    The MRB trial (Rx name Dirucotide) was the third trial I had participated in over the years, and was Fast Tracked for FDA approval. Like the others though, the test was dropped for 'marketing reasons'. Apparently, there is not enough funding, or profit, to support many clinical trials for MS.Now the Federal Government is faced with paying my SSDI, supplement my Medicare, and most likely reinforce my housing situation.

    How much subsequent program funding is involved with the non-action of federal grants? If there had have been more proactivity in our father's times, would there be a cure or at least prevention for us. And, how many children of MS patients will suffer our same fate?

    That is why I am a tissue donor thru my local MS Society Chapter. If I can make the difference in life, or death, it is my responsibility. In the meantime, I whole heartedly support your efforts to reach out to our legislators to match our plight!
  • andy   May 22, 2015 12:46 PM
    I have read that the odds of getting MS (in the US) is about 1 in 1000, and the odds of a child of a parent with MS being diagnosed with MS is 1 in 750. I would be wary of the 1 in 40 number.....
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    marshina  May 22, 2015 12:47 PM
    Decades ago, the medical world said it was not inherited. M.S. is another form of the Epstein-Barr virus. Certain triggers bring it on. One can only hope that if they discover a cure to repair myelin, many diseases will also be cured. Meanwhile, live your best life. Fear and stress doesn't help.
  • Jan Groft   May 22, 2015 1:35 PM
    Thank you Rebecca for your insightful blog on your experience with MS. My husband was just diagnosed with MS in January 2015. He had been misdiagnosed with spinal stenosis for 10 years so by the time we found out he had secondary progressive MS. He was a telecommunications engineer that began to suffer with memory and fatigue until he had to leave his job! We then supported ourselves with our lifetime savings until he reached the age of 62, he would have never even thought of taking any kind of disability.
    Now I am 62 and still have the love of my life in body but he is nothing at all like the person I married, it is so sad for both of us.
    Thank you for being a advocate for folks who suffer from MS; hope there will some day be earlier detection and more hope for those who suffer.
  • Aline Susan Farmer   May 22, 2015 1:38 PM
    I,too have MS.The year after my daughter was born, I was finally diagnosed w/ MS., I Had no inkling of what was to come!My life was picture perfect- I Loved being pregnant& it was 1st and only time ever! 4wks after my baby girl was born I started experiencing stange things! The left side of my body was completely NUMB! From my head to my leg...So terrifying because I had NO idea what was happening!!PS.Neither did Neurologists until following yr.of1991!!Thanks to MRI-(of brain) that I insisted BE Repeated thanks to an attorney who informed me that the original MRI was taken of my NECK! I do believe in angels...and although the 2nd MRI definetly showed tell-tale signs of MS--Be True to Heart...Don't ever give up!!
  • Mary   May 22, 2015 5:28 PM
    I have had MS since 2006. We actually moved out four children across the country from Massachusetts to California for a better climate for my health but also to help prevent this horrible disease from attacking my youngest child, a daughter now ten. Research shows higher MS rates above 42 degrees latitude and if she moves before the age of 15 it is supposed to drastically reduce her risk. So we made the very expensive move. I feel much better with the mild San Diego climate and I pray they find a cure before my children and others ever have to suffer like we do. God bless!
  • Denise Thomas   May 22, 2015 7:55 PM
    Yes, I agree with you 100%. Our older son at age 23 was diagnosed with a rare form of MS November 2010 and he died April 2011. It is a horrible disease. We watched his health fail within a short period of time. No family history of MS on neither my side nor my husband's. It is still stressful until this day. We have a second son approaching 23 this year and a grandson age 7. Are there any testing that can be done before symptons start ?
  • Pauline Mcgowan   May 22, 2015 7:58 PM
    you have a beautiful family Rebecca so keep on fighting we are fighting with you all of us with M.S. HERE IN SOUTH AUSTRALIA .
  • Rachel   May 23, 2015 12:08 AM
    Hi Rebecca,

    I assume you are aware of the scientific data suggesting that 'adequate' exposure to sunlight when a child is under the age of eight can reduce the risk of developing MS? From the study of identical twins who grew up separately. Presumably your neurologist has access to data on this an can advise you on how to improve children's chances of not developing the disease in later life. Well done on an impressive effort raising money and the profile of MS. Good luck, Rachel
  • Mike Spencer   May 23, 2015 5:03 AM
    I was diagnosed with MS many years ago, I have 4 grown up children, and a lovely wife, live in England and now have MS relapsing in its continuous way. I saw your comments and feel too that we can fight this together. If you fight you may go down but nevertheless you go down fighting. Walking is very difficult and I feel continuous pain in my legs but still life can be wonderful. Driving is no more, work is no more, but the time spent, and the people I meet, whether forgotten or not is better than before I had MS. Before I had no time to enjoy people and places. Now I Live life, every minute is precious and can be better than before. Fight it, and you will win with me, don't let that disease get the better of you remain a fighter. It will slowly diminish as you fight it in your mind.
  • Avatar
    Debbie402  May 23, 2015 11:37 AM
    I am the daughter and mother of MS sufferers. Ms took my mother, and my daughter was diagnosed at 17, 5 years 12 years after my mom. We need to find a cure
  • ROGER WISDOM   May 23, 2015 4:09 PM
    I'm the only person that I know of in my family.I got my diagnosis in 2005.
  • Avatar
    SmartyPants  May 23, 2015 10:47 PM
    I so enjoyed your article, yes first hearing the words Multiple Sclerosis changes you, i still can see myself leaving my neurologist's office and walking down a narrow hallway, thinking my life is now going down this alternative path and won't be the same, and it wasn't. But after working 35 years in service to people with disabilities, i had to retire my passion and it took some adjusting. I got a good Jungian psychologist and found my way out of that tunnel.
    But good news, one day when i was cleaning my closet i found my box of journals from the early eighties when i first moved to Oregon working in the Wallowa Mt's doing timber inventory. Well i found myself chuckling and wrote three fictionalized memoirs in "The Eve Chronicles" by Diane DeVillers, the three books in it are "From the Waters of Coyote Springs", "Felix and Eve" and "The Arrangement. All three you can get separately if you want on ebook, and the paperback "The Eve Chronicles" has all three. Without getting MS i never would have had the time to write my books.
    It's all about loving, spending time with people you love and knowing life unfolds as it should. Acceptance. Unconditional Love.
  • Suzanne branch   May 31, 2015 11:22 AM
    My brother had Ppms and died at 38. My sister and I have progressive M S. My daughter is 32 and I worry every day. We live in NY and didn't know about the climate thing.. There is nothing left to do but worry.
  • TammysMom  Jun 8, 2015 11:59 AM
    As the mother of a 46 year old daughter who was diagnosed with MS at the age of twenty, and the sister of a brother who had Chronic Progessive MS, who died at the age of 48, six months before my daughter was diagnosed, I know full well the pain and fear that this disease brings. I am fearful watching the progression and toll that this disease takes on my daughter and her family. I am fearful that my thirteen year old granddaughter might someday hear those dreaded words: "You have MS." I am fearful that my son's two cildren might also have inherited that genetic connection.
    We, whose lives have been touched by this disease, can only spread our activism, by encouraging others, along with us, to lobby Congress, to fight for legislation to provide funding for research, and to seek legislation to provide disabled access in every area of a patient's life.
  • Lillian Cruz-Orengo   Jun 8, 2015 5:30 PM
    Dear Rebecca,

    Lives like you keep me going!
    I am a "rocky" Assistant Professor in Neuroimmunology at UC Davis. My research focuses on sexual dimorphisms at the blood-brain barrier that predisposes to MS. My "personal approach" is that biomedical research is much more than publications and grant money. It is about improving the quality of life and creating a better future for generations to come. Thanks for sharing your story and remind me the human aspect of what I do.
    God blessed you and your family,
    Lillian
  • William Key   Jun 9, 2015 9:26 AM
    I as a father was not diagnosed with MS in the early 70's but got diagnosed in 1990. In 2012 my daughter was also diagnosed with MS so I can share the pain that you have gone through but have kept my positive attitude and great sense of humor which got passed on to my daughter.
  • Ronna Leubitz   Jun 9, 2015 8:41 PM
    Rebecca, I was touched by your story. My dad was diagnosed when he was 19. I was dx. in 1979 about 36 years ago. I didn't have any major issued until 2003 when ny father's MS was failing and and subsequently died that year. Since them my health was failing and by 2011 I ended up in a nursing home. I can no longer walk but thank goodness I still have my upper body strength. I'm scared, but I have hope. We have to have hope.

    Thanks again for sharing your words. Let's hope that the MS stops with our generation. I would pray I never have to hear my 23 year daughter tell me that she has MS. I'm sure you feel the same. Be well, my friend.

    Ronna Dekson Leubitz
    Beachwood, Ohio
  • Jessica Quatromoni   Jun 18, 2015 6:33 AM
    I was diagnosed in late October 2014. I am currently not on any medications but am active in alternative therapies such as Reflexology, yoga, acupuncture, and homeopathy. Looking into essential oils at the moment and go to see a holistic healer next week.
    I have a paternal aunt who has MS and has been fighting for about 10 yrs. She is making progress and has been abole to lessen her meds from 3x daily shots to 3x per week 3x a day.
    Research must keep going forward so we can all have longer healthier lives.
  • Amanda   Jun 19, 2015 6:22 AM
    My mother currently suffers from MS, so I am agreeeance that future research needs to be conducted regarding the possible link between inherited MS genes from parent to child. As a child of a parent with MS, I constanly paranoid, scared and frightend at the slightest symptome or sign that may indicate MS. This is a viscious disease and research is neglecting to focus on this disease as their focus is on disease such as cancer. There needs to be a balance because faavoring the research from those who suffer from one disease over another is not moral. Every life is valuable, and a parents job is to protect their childrent from any harm in this world. How can a parent protect their child without the cooperation of research organizations? However, for now my mom and her health are my biggest concern because she is my world and does not deserve this disease. I wish I could take it from it her and save her pain.
  • RUTH EREZA   Jun 19, 2015 11:38 PM
    GOD CONTINUE TO BLESS THE MS COMMUNITY ALWAYS IN MY PRAYERS!!!
    MS PATIENT

    BIBLE,NUMBERS 6:24-26
  • Deborah Richter   Jul 5, 2015 11:52 AM
    My diagnosis was in the late 80's when I was approx. 33 years old. After that I had many more health issues. Rectal Cancer, An Ostomy and a Urostomy. So I have two bags to empty a number of times during the day. I have severe & unrelenting back pain and have seen 4 Pain Specialists and no one can help me. One of them actually Made it Worse. In a Wheelchair for the last almost 3 years. I am 59 years, have a 17 year-old daughter. My employer of 32 years the United States Postal Service 'suggested' I retire. I was forced to sell my home. I had to .It has All become Unbearable. The Pain is 24/7. That is my story, my life with no end to it in sight.
  • Florence S. Sawyer   Aug 21, 2015 1:38 PM
    I Applaud Rebecca Kuchar for her Advocacy re; M.S. My only relative w/ M.S. Was a 'distant' Cousin' who "apparently"had Primary M.S. and died within a few years.NOT much was known at that time, and we STILL do NOT have a "handle" on treating M.S. Personally, I believe we should advocate for More Activity, e.g;.; WALKING more , eating correctly, and having Service Dogs to walk with.! We should not be afraid to have Children...I had Seven in Ten years, and this kept me from having Symptoms.! I had an "Amazing" family of ALL healthy children ! We should NOT be afraid of this disease! We should Fight the Wheel Chair ! & ask to have local Service Offices to help us be more independent ! I've had my say, now I hope & pray that those in High positions will see our need and address it.! I had ONE Wonderful Senator from our area who "listened to me".....and he is dealing w/ Cancer ! PLEASE do NOT neglect anyone who has this "insidious " disease who asks for help. PLEASE Listen to them !! , and Provide this help !!.
    Thank you in advance, Florence S. Sawyer, Tioga County, NY 13827
  • Amanda   Apr 19, 2017 1:43 PM
    I was diagnosed with MS in 2005, about 6 mos after giving birth to my beautiful daughter who is now 12. I am, and always have been, determined to stay up to date on current treatments and alternative ways of dealing with my MS. I claim it, but it is not who I am! So many sad and depressing comments on here! You have it. OK. I'm not trying to minimize the symptoms and struggles of MS. I've had my own. Only you can decide what kind of attitude you will have. But, if you constantly live in fear of the "what-if's" and the future possibilities, what kind of life are you to have? What kind of life are you leaving and living for your children? Own it and take responsibility. Take advantage of all the scientific research and documentation that supports a healthy lifestyle and apply to your life and the life of your family. If you can change diet and your regional area, Why would you not do these things to give your children the best attempt of preventing it from happening to them? Your life is what you make it. Take care of yourself to the best of your capabilities. Don't let MS own you! I truly believe that sometimes God allows certain things to happen to us. Not only does it draw us closer to Him, He uses our strength to be advocates for our situations and to help others deal with it. I appreciate the MS support community! I'm grateful to all those who advocate! Thank you so much!
  • Donna Fuentes   Mar 7, 2019 2:28 PM
    My daughter recently diagnosed with MS. She is 32 years old. She has 15 lesions on her brain. Right now she is having problems with her vision constantly having severe migraines. She currently is receiving infusions once a month now it has triggered and she has the JC virus...I need to have a support group for me. Im finding myself feeling terrible that I can't help her. This s a chronic disease and I never know when im going to get a call that she can't see anymore or she can't walk... As a mother you want to help and you can't. I need some some support. I'm finding myself upset all the time and now my diabetes levels are gong up and down . Any suggestions would be appreciated.