March 8, 2010 43 Comments

What You Can Do About Batten Disease

My friend, Chris Hall, has told me about Batten Disease, an illness that strikes down children, most often in the 4-10 year-old age range. Chris’s son, Matthew, passed away from the disease a short while ago. They’ve set up a Facebook group about their son, and about Batten Disease, to raise awareness.

Chris told me, “Our first aim is to significantly increase numbers (for awareness). Once we have done this we’re going to look at creating a charity to help stop this terrible condition and also help children who get it.”

So, the only ask at this time from Chris and his family, is that you consider joining the group.

My ask, to add to this is that you look at the symptoms (according to Wikipedia) and consider requesting a screening if this raises a flag:

“Early symptoms of the disorder usually appear around ages 4-10, with gradual onset of vision problems, or seizures. Early signs may be subtle personality and behavior changes, slow learning or regression, repetitive speech or echolalia, clumsiness, or stumbling. There may be slowing head growth in the infantile form, poor circulation in lower extremities (legs and feet), decreased body fat and muscle mass, curvature of the spine, hyperventilation and/or breath-holding spells, teeth grinding, and constipation.” – source, Wikipedia.

Peace to you, Chris and Mel, and I’m sorry I never got to meet Matthew in person.

ChrisBrogan.com runs on the Genesis Framework

Genesis Theme Framework

The Genesis Framework empowers you to quickly and easily build incredible websites with WordPress. Whether you're a novice or advanced developer, Genesis provides you with the secure and search-engine-optimized foundation that takes WordPress to places you never thought it could go.

With automatic theme updates and world-class support included, Genesis is the smart choice for your WordPress website or blog.

Become a StudioPress Affiliate

  • Pingback: 10 Inflammation Fighting Foods | Weight Loss And Better Health Solution

  • http://blog.clickbooth.com/ Eric Schechter

    Happy to see you spreading awareness for virtually un-known diseases/disorders like this Chris. It can be really tough to get funding and donations for a disease that most people don't even know exists. Will help spread the word as much as I can.

  • http://cheap-i-m-ebooks.blogspot.com/ Davor Gasparevic

    Man, this sounds so terrible… And the boy seemed to be cute. I will send an invitation to all my friends now.

  • http://conversational-uk.co.uk/ Rich Baker – Conversational UK

    I know Chris personally and was touched and saddened when he told me about his son. It's great you are using your profile to raise awareness for such a worthwhile cause.

  • Chris Hall (@chrish10)

    This is my son's story and all we want is awareness at the moment, then onto bigger things. You're a great guy – Thank you so much! That's all I need to say!

  • Jo Porritt

    Thank you Chris Brogan for highlighting this awful disease and why we need to raise awareness – and more importantly, love and support to Chris Hall, who lost a beautiful son :) Chris, keep going – this is Matthew's legacy x

  • http://social.coxlucia.com/ coxlucia

    My heart and prayers go out to you, wife and family Chris (@chrish10). An undeniable familiar process that I have had to go through as well, both as the mother of a dead child and as a pediatrician. Will support you in spreading the word and reinforcing awareness. I will carry your message in my blog in English and Spanish. Thank you for sharing your story.

  • http://social.coxlucia.com/ coxlucia

    My heart and prayers go out to you, wife and family Chris (@chrish10). An undeniable familiar process that I have had to go through as well, both as the mother of a dead child and as a pediatrician. Will support you in spreading the word and reinforcing awareness. I will carry your message in my blog in English and Spanish. Thank you for sharing your story.

  • karimacatherine

    Being a mother, I feel deeply for Chris' loss and I understand why he wants to prevent other parents to go through this. If anything, Good can come from this tragedy and make sure, initiatives towards awareness are put into place. All my sympathies to the family and let we all be advocate to save children's life by awareness, in this case, for the Batten disease.

    Karima-catherine

  • http://twitter.com/MarandaGibson Maranda Gibson

    Some of the greatest weapons against a disease are understanding, awareness, and support from a community. I'm happy to see that this continues to be a great community. Keep up the good work.

  • http://twitter.com/DickieArmour Dickie Armour

    Chris B, I love you man!
    I know Chris H and when he told me about his son, over lunch at Yo Sushi, I was in tears.
    I'm now in tears again tonight having read your blog post.
    You're one amazing man and your reach will help Chris and Mel beyond belief.
    You talk about making people feel special. WOW! You just made Chris and Mel feel really, really, really special, but more importantly you helped the memory of Matthew be incredibly special by spreading the word.
    WOW!
    THANK YOU so much for taking the time to write about Matthew's story.

  • http://www.maryannwrites.com/ Maryann Miller

    Wow, I have never heard of this disease. Went over to Facebook and joined the group.

  • http://www.quired.com J. Paul Duplantis

    Chris I am so sorry for your loss. I will certainly help share this message so others may be able to catch this earlier. Thanks Chris Brogan for the post. You are a class act.

  • Emma Walton

    Thanks for doing this Chris B – Chris H (@chrish10) and Mel are close friends of mine and this will be a fantastic help – and yes Matthew was an amazing little boy but he lives on through Chris, Mel and Tom.

  • http://www.stuartwitts.com/ Stuart Witts

    Even though I have only met Chris H twice in person we have spoken many times via Twitter and was also saddened to hear about the loss of his son.

    Huge, huge kudos to Chris B for taking the time to write this post and help spread the word for this worthwhile cause.

  • http://www.getinthehotspot.com/ Get In The Hot Spot

    I have joined the group. So sorry for your Chris but many thanks for raising awareness to this disease. I'd never heard of it before. Your son will be much missed and today people all over the world are thinking about him.

  • gregdoig

    Sorry to hear of the loss of Matthew. I had never heard of this disease until a friend of mine told a group of fellow Army Rangers, at a reunion years back, about him, his wife, and family losing three daughters to this disease during the 80's and 90's. It's hard to think of any parent's loss. My friend has a son and daughter that made it into adulthood, but not without overbearing worry on the parents part. I know Mark lists this site as one he supports, for those looking for more info. http://www.bdsra.org/

    • novva22

       I’m agree with you
      “Batten Disease ” we must pay attention…..

  • linfp2009

    http://www.footwearclothes.com
    Nike shox NZ,TZ,RZ,monster trainers
    $45/pairs hot forsell

  • linfp2009

    http://www.footwearclothes.com
    lacoste shoes
    gucci jeans
    evisu jeans

  • http://www.webconsuls.com/ Judy Helfand

    The day is drawing to a close, but I wanted to stop by an leave a note. I learned of this disease about 20 years ago. We owned a country inn in the White Mountains of New Hampshire. One summer day a family arrived from Ohio to spend a few days. They had three sons, the youngest being Bret( who was about 5) who was confined to a wheelchair. I was somewhat shocked as our inn (built in 1865) didn't have any wheelchair accessible rooms, at the time it didn't even have private baths, but the Killen family didn't mind they were going to enjoy their summer vacation. My oldest son was about 9 at the time and he became friendly with their middle son. On the second day of their visit Mrs. Killen came to me and asked if I would consider trading children for half a day! She explained that they wanted to take their sons to Storyland, an amusement park in Jackson, NH and she wanted to know if she took our son Aaron to Storyland would I be willing to take care of her wheelchair bound son. It was then that I learned all about Batten Disease http://bit.ly/d6jnGx. See also http://www.bdsra.org/index.html.
    I took care of Bret that day, with the help of my visiting mother and my younger son, Daniel, who sat with Bret and talked quietly to him. When the Killen finally checked out my little boys cried, as did theirs. We learned that day how precious life is and we wept when Bret's father talked about how Bret had seemed a perfectly normal child until Batten's was diagnosed. Every night for many years each of my sons said a prayer for their family. It was just a few weeks ago that I learned that Bret passed away on May 31, 2004, he lived to be 20. Here is their Twitter page http://twitter.com/BDSRA Thanks for listening.

    • Novva66

      YES i agree with you.. “Life without Matthew will never be the same again for us. “

  • http://www.candicerjohnson.com/ candice johnson

    This is why I read your blog everyday. You think of others. Joined FB page and said I came from your blog and offered art when they do a fund raising event. Continue to be you and we will all prosper.

  • http://www.blurbpoint.com/ seo firm

    As yet, no specific treatment is known that can halt or reverse the symptoms of Batten disease. However, seizures can sometimes be reduced or controlled with anticonvulsant drugs, and other medical problems can be treated appropriately as they arise. Physical therapy and occupational therapy may help patients retain functioning as long as possible.

  • Sarah Cookson

    My two nieces have Battens, the same form as Matthew had. One of them died in Dec 2008 aged just 5 and a half; the other is now 4 and a half, but is has lost her ability to walk and her sight is failing :( I never met Matthew, but through Mel and Chris he has become a very special little boy and a beacon of hope that through raising awareness we may one day find a cure for this devastating disease. Thank you for helping x

  • Martin Freeman

    My beautiful daughter Katie died of Battens disease last July. She had just celebrated her 6th birthday. She spent her last 6 – 8 months of life in unbearable agony as her brain sent garbled messages to the muscles in her arms and legs. Imagine having cramp / muscle spasms for 10 minutes – that would be pretty awful. Now imagine it for 6 to 8 months, and you will get where I am coming from.

    Add in seizures (over 300 per day), blindness, and the complete loss of all motor skills, and you will begin to realise the cruelty of this disease.

    Whilst there is currently no cure, gene and enzyme therapy give cause for hope. But it needs awareness and funding. The only redeeming feature of Battens is that finding a cure will most probably lead to massive leaps forward in curing other diseases (particularly Alzheimers).

    So, thank you Chris Brogan, for commenting about Battens. Everything helps – it is much appreciated.

  • http://chrisbrogan.com Chris Brogan

    Martin- thank you for coming by and sharing this. I'm so sorry to hear about Katie. It sounds horrible.

    I hope we can find some more help and support.

  • http://retroparenting.com/ Dr. Daisy aka Dr. Mommy

    I am so sorry for Chris' loss…I can not imagine losing a child much less to a disease that is not well know. Thank you to Chris Brogan for sharing this story and about this disease.

  • Pingback: Is There A Difference Between These Skin Diseases – Acne Vulgaris and Rosacea | Acne Blog | Free Tips, Resources and information | KILL Your Acne

  • melhall

    Hi Chris,

    I'm Matthews Mummy ………. can I thank you so very much from the bottom of my heart for helping to spread the word of Battens Disease, it means a lot to myself, Chris & to those who desperately need the cure to be found.

    Matthew was and will always be a very very special little boy who lit up any room he was in with his amazing blue eyes and his smile that would melt any heart.

    Battens disease is a very cruel disease. Matthew had the Late Infantile form which meant he was born a perfectly normal little boy who thrived up until the age of 3. He developed seizures and epilepsy was diagnosed. Over the next few months he started to loose all skills he had once learnt and in Oct 2007 Great Ormond Street Hospital, London delivered the devastating diagnosis. Can anyone imagine having a perfect child then slowly watching that all slip away………………..

    Sadly in November 2009 Matthew passed away just after his 7th birthday. He fell asleep peacefully in his Mummy & Daddys arms.

    Life without Matthew will never be the same again for us. We miss him more than is possibly imaginable but we as his parents will make sure Matthew will never be forgotten and will strive to raise awareness of this vile disease to help other families from going through what we did. Its the very least we can do for our little Matsie.

    I set up Matthews page on facebook to raise awareness …….. my only hope is those users of this popular network site will join his page and help me and my family spread the word. So PLEASE keep spreading the word for Matthew & all the other poorly kiddies and hopefully one day I can tell you “Yes!!!!! The Cure is found”

    Matthews page link is: http://www.facebook.com/group.php? gid=194610548673&ref=ts

    Please give your children an extra kiss and a cuddle every day……….. xxxxxxxx

  • thejakestershow

    Thanks for the heads up about Battens. I was recently on Padre Island and one of my friends children was stumping them and the local doctor didn't have a clue. I fed them a stack of information and they have now sent him to a specialist

  • annawoods04

    I am very sorry to know about your son and Batten Disease. I would like to know more about this disease and also would love to job the group as well to spread the awareness because not necessarily everyone should be aware of these diseases. So can we still get some more detailed information about the disease in order to also pass on the messages how to avoid and take preventive measures against it.

    Texas breast reduction

  • lizzymagvire

    I am really sorry for you Chris. And we are not able to fill up your loss but what we can do is just pray that other kids get protected from this disease. Can you tell me what are the steps to get cure from it??
    fit-flops

  • http://www.beyondbatten.org/ Craig Benson

    Chris B. – Thank you for bringing much needed awareness to this issue. Chris & Mel – I am very sorry for your loss, and I can empathize with your pain and your resolve to eradicate Batten disease. Our daughter, Christiane, was diagnosed with juvenile Batten disease a little over two years ago. (You can view our personal story on our Web site: beyondbatten.org.) My wife, Charlotte, and I established the Beyond Batten Disease Foundation with a two-pronged approach to eradicating this devastating disease: 1) accelerating research to find a cure for Batten disease, and 2) preventing Batten disease and hundreds of rare diseases like it by teaming with the National Center for Genome Resources to develop and commercialize a comprehensive genetic carrier screening test. Thank you for helping to spread the word about Batten disease. Only through raising awareness and additional support will we be successful in our mutual efforts.

  • Pingback: The power of positive bloggers « Rod's Rants

  • http://www.otoemlak.com/ umuts

    Thank you

  • http://www.eyewear-rayban.com ray ban wayfarer

    The project is very interesting

  • http://www.yuregininsesi.com/ yuregininsesi

    am very sorry to know about your son and Batten Disease. I would like to know more about this disease and also would love to job the group as well to spread the awareness because not necessarily everyone should be aware of these diseases. So can we still get some more detailed information about the disease in order to also pass on the messages how to avoid and take preventive measures against it.

  • Seslimeydan
  • http://www.workinjuryie.com/occupational-skin-disease/ Occupational Skin Disease 

    thanks for tell us about batten disease this information help us a lot

  • Anonymous

    “Batten Disease ” I think we must pay attention to IT .will you??
     

  • http://www.lacosteoutlet.co lacoste sale

    Batten Disease？

    • http://www.ralphlaurenpoloshirtsonline.co.uk cheap ralph lauren

      I have bookmark your blog site and will be without doubt coming back. Once again, I appreciate all your collection.

GetSocial