Mom’s of LHON Affected

Twenty Nine years ago today, I gave my husband a son for his birthday! Today as I look back it’s always bittersweat.  Why do certain days bring such floods of memories.  I still remember sitting at the table in Colorado Springs telling my husband how excitiing it would be to have the baby that day!  Well that evening our son Brian was born and life was so good.  My husband was killed in a car accident in 2000 and now every year we don’t say much but it is always kind of a downer for Brian that his Dad isn’t here to celebrate his birthday with him.  It’s just another one of life’s little curve balls like LHON.

This page is for the Mom’s (and Dad’s) of LHON affected.  Our concerns and emotions about this disease are different than those of our Sons & Daughters.  In the 8 years since my son lost his sight, there has been no place to disccuss my feelings or concerns about this disease.  We, as Mothers unknowly pass this gene to our children and I can’t speak for you, but I have had a lot of emotions that have gone along with this, guilt, sadness, loss and yet always needing to be strong for my son.  I would like this to be a place that we can converse, tell our stories and maybe occasionally pass some advise to one another.

This may not be the ideal platform but we can make it work.  To tell your story or ask a question, use the comment feature and we’ll see how that works.  You can email me your story at momsoflhon@comcast.net and I will post it to this page.  You can use word and just attach it to an email or copy and paste it into the body of an email.

This is something I have wanted to do for years and with all the advancements in reasearch, now is a great time, so feel free to share and maybe we, as the Mom’s of LHON Affected can realize we are not alone in what we are going through with our grown children.

Looking forward to hearing from you!

Christy Aston – Brian’s Mom

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22 thoughts on “Mom’s of LHON Affected

  1. Robyn

    I’m so incredibly grateful to discover this website and particularly this page. I am a 39 year old mom of an almost 17 year old son who lost his vision to LHON within the last 4 weeks…first his left eye, then the right eye shortly thereafter. You know the emotions we are dealing with and yet, my son is handling it with grace and strength. I now understand that this is what my brother has – he became blind 8 years ago. I feel guilty that we discounted what he said he could and couldn’t see. I have two nephews and two grandsons (2 1/2 and 6 weeks) and now wonder if they might also develop this. I work and go to school fulltime (studying Occupational Therapy) and am a sole provider of my household, but I will do my best to check back and read updates. You guys are doing amazing things and I am very thankful to have found this website.

    Reply
    1. Christy Aston Post author

      The advancements in research is unbelievable and the Bascom Palmer Eye Institute is in the process of sending what we hope is a cure for LHON to the FDA this year. My son lost his vision in 2004 and we were told go home and learn to be blind, no research, no treatment, no cure. It was devastating. In 2011, Brian began researching and found the LHON facebook page, the study in Miami and 3 weeks later we had a fundraiser to get him to Miami and begin the vitamin regimen he is now on. We held his 2nd fundraiser last month and he is making his 3rd trip to the Bascom Palmer Eye Institute in July. It has been a fantastic year for Brian and he has recovered a lot of his peripheral vision. He has never accepted being blind, and it has taken its toll on me. I am so proud of his determination and dedication to a healthy life style. My daughter is 20 weeks pregnant and was tested for the mutation when she got married and we found out last week that it is a boy, so the advancement in research is even more important. We do not have any other family members that are affected.
      I would research the Idebenone for your son and check out the LHON facebook page as it is a wealth of information. Feel free to email me with any questions you have at momsoflhon@comcast.net

      Reply
  2. Jackie

    I have been following Brian’s blogs for the past two months. I am from England and my son developed LHON in January of this year. I had never heard of this awful disease before and doing research I found your son’s blogs on you tube. He is an inspiration to all LHON sufferers and he has given hope to us. My son has just started on idebenone. (Been on it for the last 3 weeks) and taking all the vitamins that Brian is taking.
    Please tell Brian to keep posting his blogs. If I lived closer I would love to meet up with you and your son. I do not know anyone here in England yet with LHON. If anyone reading this knows of anyone in England please email me on a.ashworth@zen.co.uk
    Thankk you Jackie

    Reply
    1. Christy Aston Post author

      Thank you Jackie, I agree there is so much hope now with the research and Idebenone. My journey with Brian has been a long and hard road, in 2004 his doctor told us to go home and learn to be blind, it was devistating. I couldn’t find any information on the internet and was totally lost on help or support of any kind to deal with this. Brian is the first time we have ever heard of this disease in our family. We had to move in 2011 to a new house and that’s when things got crazy. I was going to call the suicide prevention line but had to take my Mom to the hospital, that’s when Brian got back on the internet and found the facebook page and the research and the Idebenone and it has changed his life. He is a functioning young man again and has regained so much vision that he is taking the bus for the first time and working. I don’t understand all the science behind all this but Brian has spent so many hours on his computer with a magnifier researching all this and how to heal his body and he understands the science of it all. Besides the Idebenone and vitamins, he also gave up a long time smoking habit and fast food. He works out everyday so it’s more than taking the pills. He’s even cut his Pepsi habit down to 1 or 2 a day and drinks a lot of water.

      There are others with LHON in the UK, post on the LHON facebook page and you will find them!
      https://www.facebook.com/#!/groups/29805437752/

      Reply
  3. Jackie

    Hi Christy Just to let you know that Tom has been on idebenone and all his other vitamins for exactly one month now and he has been back to his consultant for his monthly check up. He looked in the back of his eyes and said there was a significant difference from last time. Last time he could see inflamed blood vessels, today they had gone. He read 2 lines down on the eye chart. If that is after one month, I am optimistic that things will progress. Tom is also going for hyperbaric oxygen therapy. He has to have 22 consecutive sessions daily of this. If you google this you will find more information. It may well interest Brian. I will keep you informed of Tom’s progress.

    Jackie

    Reply
    1. Christy Aston Post author

      Wow that is great Jackie! I just read about the hyperbaric oxygen therapy. Brian has researched it and was very interested in it. Since he is taking such large doses of Idebenone and all the other vitamins, he has had a full physical Friday and a liver function test to be sure there aren’t any side effects that could be causing other problems. I will post his results next week when we get them back. Brian goes back to the Bascom Palmer Eye Institute July 8th and then he will know how much his vision has improved in the last six months. It does give us so much hope, something we didn’t have for the first seven years. Keep us informed, it helps everyone to know that others are seeing improvements in their vision from the Idebenone and Vitamins.

      Reply
      1. martina

        Hello Christie!
        That’s very good news that you take vitamins Idebenone, I ask you … send me a link to them. I would like is for the brother, has also LHON is from the Czech Republic …. Thank you very much Martin

  4. Jackie

    Hi Christy

    Tom has been for his oxygen therapy today. I will be taking him for the next month every day. He is taking is idebenone and 11 other vitamins too. This treatment is very exciting and he has a professor monitoring this treatment. We are lucky this a charity run treatment otherwise we would be paying up to £150 per session. We pay only £10 every time we go. People with Multiple Sclerosis use this treatment because their disease gives them optic neuritis and with the oxygen therapy this clears up. This gives me hope for Tom as the two are very closely linked. I really hope Brian gets on ok and I have just read that he has sight in his left eye. Look forward to seeing his blog. I wish you and Brian all the very best and if it had not been through seeing Brians Blog I don’t think we would have got this far in such a short time. I do thank you Christy for getting back in touch with me. As a mum it is very hard to come to terms with. You will fully understand this. I hope that in the near future we could meet up. I know I am in England but we are not a million miles apart. Love
    Jackie

    Reply
    1. Christy Aston Post author

      That’s awesome Jackie, I am aware of the link between LHON and MS and years ago when I read about it, it scared me to much to research further. Probably not the best idea but there wasn’t anything out there about LHON on the internet and his Doctor gave us no hope and I didn’t need much more to stress over. Brian leaves for Bascom Palmer Eye Institute on July 8th for his 3rd appointment and so we are excited to see the results of how much his vision has improved since January when he went. It’s hard to let him travel so far alone, but I take care of my Mom 24/7 who has Dementia so I can’t go with him, but with his site improving so rapidly, I feel more confident letting him go.

      I lived in Germany for almost nine years, Brian’s dad was in the Army and my daughter was born at Landstuhl, Germany. I was able to travel quite a bit while over there but we never made to it to London, always wanted to, but the closest I came was flying out of Heathrow to the states in 1989.

      Reply
  5. Karen Joy Flowers-Clark

    Hi there, my son, Jason lost his sight over about a 4 week period in 2007 at the age of 24. Needless to say we were devastated!!! However, since then he has obtained his associate degree and plans to finish his bachelors degree. He was actually only diagnosed with Leber’s disease a couple of weeks ago!! He is trying to be treated at the Bascom Palmer Eye Institute but is awaiting word on that. I am thankful this site to read other Mother’s who have gone thru experience. I am hopeful.

    Reply
    1. Christy Aston Post author

      There is so much hope now than even 5 years ago. It took a long time for your diagnoses! We were lucky in that Brian’s Doctor submitted the genetic test as soon as he lost his second eye, so we knew very quickly. It has been a long eight years, but Brian’s vision has improved so much in that last year that his life has really improved. Congratulations to Jason for finishing his degree! It is such a hard age for the boys to lose their vision, just when they’re trying to figure out life. Do you know what mutation Jason has?

      Reply
  6. Jackie

    Hi Christy

    How is Brian doing. We are missing his bloggs. I hope he is well and progressing forward. Tom is improving greatly with the idebenone and his vitamins.

    I hope to hear from you regarding Brian soon.

    Kind Regards
    Jackie

    Reply
  7. Karen Barr-Gosselin

    Hi Christy,
    I am an aunt of a wonderful nephew who has LHON and Brian’s blog really helped him initially. Miss Brian’s blog entries, so tell him he is thought of and prayed for …hope he is OK. I am happy for your grandchild….so, congratulations on that!! Any info you can share that could help my nephew I would appreciate.
    Hope to hear from you.

    Reply
    1. Christy Aston Post author

      Brian is doing fine, he started a new position on Monday and hopefully will be much happier. He didn’t have much change in his vision all summer but stuck to his routine and has had some really severe eye pain the last month. He told me that his vision is getting clearer. He’s had a lot of ups and downs the past 3 or 4 months due mostly to a job he didn’t like. I’ll talk to him about making a video.

      Reply
  8. SHEILA UPCHURCH

    My son, John, was diagnosed with LHON in June of 1996. Dr. Nancy Newman at Emory told us that she did not expect to see a cure for Leber’s during her life time. We made appointment at Bascom Palmer in January of 1997. John has been an inspiration to many. He was almost 21 years old when he lost his central vision He continued his studies at the University of North Alabama in Florence, Alabama. He passed his Series 7 test after graduating and is currently a Financial Advisor and lives in Huntsville, Alabama. He married his college sweetheart in 2002 with a beautiful wedding in New Orleans. He has his “bad” days but the majority of the time he is content and very independent. He walks without a cane. He has not tried idebenone but he did take COenzymeQ10 for a while. He is 37 years old. I am not sure I understand the oxygen therapy but will check on it. He is physically fit.

    Reply
  9. Christy Aston Post author

    Brian was diagnosed with progressive MS the end of April or maybe it’s another strange mitochondial disease, they don’t really know, they’ve never seen a LHON patient with MS. The doctor seemed more interested in him for research and science than how to help him. Like LHON she offered no treatment. She showed me the MRI’s and what is going on, she showed me how his brain is separating inside and she looked at me with the I’m so sorry look, there is nothing I can do look. She said she wanted to do more research and see him in a month. Brian was devastated and his health had changed so much in such a short time. When they first mentioned MS, I thought, that’s not so bad, they have medcines and maybe he’ll start feeling better and the headaches and eye pain that has kept him in dark room for days on end. I never expected this diagnoses or to see my son’s MRI’s look the way they did. There are medicines for Remitting/Reoccuring MS, not Progressive MS.
    Brian was determined to beat this, he had already had a heads up about MS since March so had been hard at work on the computer when he could. He is doing something very controversial and is starting to get a lot of grief on social media and comments on his blog. He is not doing something I would recommend to anyone else, he feels it is his only option, I am supportive of Brian but also very fearful of what he is doing. He asked the Doctor her opinion and she said “no comment” and that was it. I see Brian improving everyday and he thinks he is going to get his vision back in a another week, he thinks the MS is almost gone or at least the symptoms are gone. Is it Psychosomatic? I don’t know. It would be nice if he could have another MRI in a couple months and see if there is any improvement or not. I pray for Brian every night that this will work for him and that he will be ok but I can’t stop him, I am scared, really scared of what he is doing and everyone has to understand without hope, he will cease to exist and if this is helping him than I have to support him. Brian was diagnosed with LHON before his 21st birthday, he’ll be 30 next month and feels like he has lost 10 years already. Please say a prayer for him and when he is ready, he will make a video about what he is doing, he had been taking video everyday to document his journey.

    Reply
  10. maureen arthur

    Hi I liv in Colorado. My 34 yr old son was diagnosed with LHON and may have the plus mutation. Who has tried the oxygen therapy and does it help? I am checking for research in Canada since many French seem to be effected. My mother’s family came from France to Quebec then U.S. If anyone knows of current research there appreciate information. Thanks Maureen

    Reply
  11. Vanessa

    Hi all, I’m Vanessa and affected by lhon since 14 years old. Recently my partner and I have been bothered if we should have children as I understand that as a Lyon Mother we will pass it on to our kids. Appreciate any advice or if you have gone through this as well. Thanks

    Reply

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