September 6th, 2011
04:11 PM ET

Human Factor: Family vows to live for dying boys

In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. This week, meet the Leider family, who had it all and then faced the most trying of times, only to end up helping others during their grief.

Love, marriage and a family! That was our dream, and we believed it came true.

Our family began August 23, 2006 with an amazing little boy, Jason Jeffrey, and then came our little prince Justin Jay, on February 25, 2009. These two little boys became our new love, a joy completely unimaginable. We hugged, kissed, played, read, giggled, tickled, and celebrated life like a normal family. Our perfect family, living out our dream, so we thought!

January 2011 our normal life became anything but. Our dream turned into the worst possible nightmare a parent could have. We received news that shattered our family as well as our life long dreams. Our perfect little boys were diagnosed with an extremely rare and fatal genetic disease known as mucopolysaccharidoses-2, also known as MPS II or Hunter‘s syndrome.

How could this be? How could both our sons have this fatal disease? Questions and fears ran rapid through our household!

“Why us?” “ Why them?”
“How could this be happening to our little boys?”
“Why can’t life “let them be little?”
“How do we LIVE?”
“Is this really happening?”
“How many good years do we have left?”

...and of course:

“How do we possibly even think of our life WITHOUT these little guys?”

Our world has been turned upside down. We no longer have the freedom to allow our 2- and 4-year-olds to just be little boys. Their lives have become doctor visit after doctor visit, MRIs, blood tests, surgeries, weekly four-hour IV treatments, going to the hospital, physical-speech- and occupational therapies, visits to North Carolina Medical Center every six months, and countless checkups, while we constantly seek family support and help with our 6-month-old little girl .

As parents you would think hearing the words “your boys hopefully will live to age 15” is the worst, but what leaves us unable to breathe is having to sit back and wait for the days Justin and Jason’s brain and body parts deteriorate so significantly they will lose all communication, and the ability to walk. The most horrific thing is the boys not being able to recognize their surroundings and ultimately not know who their mommy, daddy, and baby sister are anymore. That is what we consider just unbearable. This waiting game has left our family’s lives in complete turmoil.

Our hopes and dreams for our little boys’ future no longer exist. Jason, our super sensitive, lovey gushy, huggy mush, who loves baseball, fire trucks, and playing Dr. Jason, we thought - maybe a firefighter, possibly a baseball player, maybe a compassionate doctor - Justin our busy boy, never sitting still, always investigating how things work with a devilish smile…another baseball junkie who pushes cars all around the house...maybe an engineer, a scientist, who knows - maybe even a race car driver! All those dreams for our little guys' success has come to an end.

We no longer have time for dreams of what Jason and Justin will grow to be. Now, we place all our effort into keeping our little angels on earth, as protected, pain-free, and comfortable as possible for the remainder of their shortened life expectancy.

Constantly worried about how to make what is left of our children’s lives an incredible magical experience!

Why can’t life “JUST LET THEM BE LITTLE?”

How it all began:

Married, have two beautiful, energetic, little boys, a home filled with love and laughter, and are expecting a third child. You can’t help but think life is such a wonderful JOURNEY.

The phone rings one morning, it is your eldest son Jason’s preschool teacher. The basis of the phone call: The teacher’s concern with Jason’s performance and ability compared to other children his age. Trying desperately to help your little boy, you attend numerous appointments, being sent from one type of doctor to another. Then finally, one afternoon you reach the Doctor who knows what’s wrong. EXCEPT you are informed that your first born little angel has MPS, a rare genetic disease that has devastating effects on children, and a shortened life expectancy.

You listen to the doctor describe the disease - the effects, the outcomes - in absolute horror and disbelief. We sat there waiting for the but, or to hear something positive, but that was not the case, it just got worse and worse. We listened to the symptoms, our hearts breaking into a million pieces, not our Jason. How could this be? And as we sat and listened to more horrific details our hearts just crumbled knowing Justin, our second little love, looks exactly like Jason and has the same symptoms, oh god! Not both of them! What do we do; the waiting was unbearable.

Imagine: You take your little frightened 4-year-old in for multiple blood tests to determine what type of the this MPS disease he has, hoping and praying it is MPS I, a more treatable and possibly curable form of the disease. Your hopes are shattered when the results come back as negative for MPS I. After a series of more blood work, the results come back as positive for MPS II, a more degenerative form of the disease, affecting only boys, that has no known cure, and a life expectancy of 10 to 15 years of age. No cure! Life expectancy! Possibly eight good years! Unimaginable and unexplainable is the pain.

Imagine, you eldest son is 4 years old. Two weeks from having your third child, of which you do not know the sex, your youngest son is tested (our hearts told us Justin had it too), and the results come back as positive for MPS II as well. Your youngest son turns 2 years old the very next day.

Trying to remain calm for your unborn child, for your sons, and your husband, you attempt to go about life as normally as possible. You go to work, do the laundry, drive to preschool, clean the house, serve meals, make the children’s beds, essentially manage a life and take care of a house now filled with ruined hopes and dreams, filled with memories of innocence and youth, the walls covered in pictures of happy moments. You sit down and think, how many more of these moments will we have? You find yourself crying uncontrollably.

Jason Jeffrey, 4, Justin Jay, 2, and along the medical-emotional roller coaster is baby sister Jordan Kenna, 6 months; they now have a life that consists of a series of routine doctor appointments and six-month visits to the University of North Carolina Medical Center. Why UNC Medical Center? This is where the renowned MPS expert Dr. Joseph Muenzer is based. After a long meeting with Dr. Muenzer, he had requested that we bring Jason and Justin down to UNC every six months to evaluate progression or regression of the disease. Dr. Helio Pedro, Chief geneticist out of Hackensack University Medical Center, sees the boys weekly for their the four-hour intravenous Enzyme Replacement Therapy. The purpose behind the treatments is to reduce the swelling and destruction of internal organs, but cannot help the brain, which ultimately will stop functioning correctly, and shut the body down.

Our once normal life has become anything but: Every day is heart-breaking, dream-shattering, emotionally draining, and the watching and waiting is unbearable... a life I hope no other parent should ever have to experience.

But we have to LIVE. Live for our little boys, and baby girl!

We vow to give them the most love and joy we possibly could squeeze into the short period of time we have left on earth with them, to do everything possible to bring smiles to their beautifully innocent faces NOW, leaving Mommy, Daddy, Jordan Kenna and the rest of Jason and Justin’s loved ones with MAGICAL MEMORIES to hold on to as we someday face the challenge of surviving without them.

Our Journey Continues!

Filed under: Children's Health • Human Factor

soundoff (125 Responses)
  1. Carla

    The dying children/youth always teach the rest of mankind how precious life is. Human life is sacred and deeply meaningful because God created us so. May the love of Jesus comfort them.

    September 7, 2011 at 02:07 | Report abuse | Reply
    • Cardiac50

      Do people ever think of how hollow that sounds??. .. if Jeebus loved them.. would they have a fatal degenerative illness in the first place. .since he was showing his love for them.. wouldn't it be nice if ohh. .I don't know.. they were never troubled with such things in the first place?.. why not simply say.." How very sad for them . and I hope they make the most of the the time they have with them" and leave it at that..

      September 7, 2011 at 02:22 | Report abuse |
    • Joseph

      People will always fall back to god when they aren't strong enough to handle things themselves. I guess that for some it brings comfort, but in the end it is all meaningless. God isn't going to help them because there really isn't one in the sense that religion has tried to get us to believe. If there is a god going around giving kids cancer or other devastating diseases then I sure as hell don't want to spend enternity with whatever that is. Nature is just that. An organism requires DNA, genes, etc to grow, just like most other living things. Sometimes they don't work in a manner consistent with sustaining life. It absolutely sucks and it is painful to watch.

      September 7, 2011 at 11:24 | Report abuse |
    • falar

      Cardiac, do you have any idea how inconcisderate that sounds? Someone offers a heartfelt commiseration for the suffering the family is going to endure, and you ATTACK them for the method by which they do it? That's absolutely ridiculous, and a little pathetic. If you don't believe in God, that's fine, but demanding that other people not express themselves makes you as bad as any zealot.

      September 7, 2011 at 16:37 | Report abuse |
    • Sarah

      You are absolutely right Carla, God WILL guide them through this trying time in their lives.... I will be praying to give this family strength as well. It's too bad that a few of the responses are completely out of line in context.

      As for Cardiac and Joseph, I will be praying for them both in hopes that God and Jesus will show them the way, instead of posting repulsing comments that have absolutely nothing to do with what this family is going through.

      September 10, 2011 at 09:57 | Report abuse |
    • Humane

      Carla, what an empty and sad thing to say, and you should really try thinking before you post. Maybe if you had you'd have realized not everyone believes as you do. Would it be appropriate for someone say the Flying Spaghetti Monster will take care of all? No? Then stop pushing your views. Thanks and have a nice evening.

      September 11, 2011 at 20:54 | Report abuse |
  2. Kelcy, Colorado

    I`m going to put a different spin on this. Although I cannot even begin to imagine what you are going through, or how I would have reacted had this been my children at such a young age, I would like you to consider what Your wishes for Yourself would be if you were told you had ALS or something similar which was degenerative and terminal. Would you want to go to the doctors every week to be poked and prodded and tested or would you want to enjoy what time you had and let the rest be up to nature or god (which ever is your preference)? Do not let Medical Science use your boys as test subjects to be poked and prodded and tested and studied as they die. Yes, studied. Are the enzyme replacement treatments to prolong their studies even if that might prolong your childrens suffering? One person noted a treatment has been developed for what killed their child but at a cost of $300K per year. How many children had to suffer for extended periods of time to develop such a treatment? How many insurance programs really pay for that? Test programs but when it is tested then families are on their own. That is a horrible teaser. Only the very rich could afford that. Even if you started out well insured even big companies look for an excuse to lay-off people who's families are a burden on the health insurance programs. Lorenzo's Oil..... yes, but that child was already damaged beyond repair although I believe he lived until his early 20's as essentially a vegatable...outliving his mom even. Good for other families but not so good for that one. The last commenter gave you a good news website to checkout and I sincerely hope it is and that it works. However, your children's loss will not be made easier by an extension of time. Their loss will never be eased in your hearts. Don`t prolong their suffering by making their bodies survivie longer than their brains. Don`t focus on making them survive at all costs where that becomes the center of your lives and your existance. Instead spend your/their time enjoying it....enjoying the boys as their are today and as they deteriorate.....enjoying your daughter, their sister, as you never want her to feel she was the child you didn`t care about because "her brothers were the sick ones" and she was not,..... enjoying your family as it is and not as you wish it was. If it is four years or five years or ten years...enjoy it. Just don`t force those poor little boys to suffer even a minute more than they have to because you.... no, "we adults" (since any of us could face this with children or grandchildren) could not let go. Let them live and die but not to just exist for your or for us.

    September 7, 2011 at 02:25 | Report abuse | Reply
    • S-F

      @Kelcy: Clearly, you don't have children because you don't comprehend. Clearly, you should simply delete your misplaced comment.
      And clearly, you must be out of your mind.

      September 7, 2011 at 02:44 | Report abuse |
    • dx2718

      If their being poked and prodded helps to develop a cure, even an expensive one, that's a GOOD thing. It means their lives have not gone to waste. If a cure exists now at $300K/yr, surely someone will find a way to make it cheaper or donors will give money to fund treatment for families that can't afford it. A cure, at any price, is valuable. Furthermore, their treatment is surely improving their quality of life as well as, hopefully, extending their lives. These parents are responsible people; they will not needlessly make their boys live as vegetables, but while their boys are here, they will do everything they can to keep them here, keep them as healthy as possible, and help others with the same disease – and this is as it should be. Which isn't to say that, if they conceive again, they shouldn't get genetic testing early and abort any fetus with the same disease. But these boys are here now and their lives should be meaningful!

      September 7, 2011 at 03:07 | Report abuse |
    • Nell144

      If you are not the parent of these children, you should not judge. Perhaps this will ease their pain. Are you a doctor? Perhaps these parents are hoping anything learned from what their boys are going through will help children with this in the future. People who sit in judgement do not help situations. These parents are going through hell and doing what they know to be best for their children. Embrace this story, let it touch your heart as it has mine. Do not sit and assume the worst.

      September 7, 2011 at 09:54 | Report abuse |
    • DrTee

      I agree with most of your points. I find it unethical to prolong life for the sake of the living. I have children and I do not have anywhere near a blank check to pay for exotic medical treatments. Personally, I would use the time left where they can comprehend what is going on to love them the best I could. This is a sad story and my heart breaks imagining myself in place of these parents. Unfortunately, life is not fair, it never will be and no one, barring some medical breakthrough, is coming to save those boys. This is where we can balance progress with common sense. Just because we CAN prolong life doesn't mean we SHOULD.
      It seems to me that these parents have the right idea in that they are planning to fill the boys' projected short life with love. I want for them the strength to recognize when to let go.

      September 7, 2011 at 10:41 | Report abuse |
    • Vince

      My son, with Duchenne Muscular Dystrophy, will live a healthier, more meaningful and longer life (nearly twice as long as those before him) due to genetic research in the field of Muscular Dystrophy. Clinical trials are essential for many reasons beyond finding a cure, they help develop better living conditions and give a broader understanding on how to manage their disease. Studies and trials help ease their suffering, provide a better quality of life and prolong their lives as well. By the way, if you don't look for a cure, you'll never find one.

      September 7, 2011 at 14:36 | Report abuse |
    • Sarah

      So these parents should do nothing and let them die, correct? You are either stupid or just plain heartless. I will pray that you will never experience parenthood as I sure wouldn't want to see you with a child who has a disability or life threatening condition.

      September 10, 2011 at 09:51 | Report abuse |
    • Humane

      Kelcy, seriously, I would never consider saying this to someone with a intelligent thoughts in their brain, but you shouldn't have a problem with it: Please shut up. Please keep your ignorant, inconsiderate, and intrusive piffle in that head of yours. Thanks!

      September 11, 2011 at 20:56 | Report abuse |
  3. fred

    Do you need attention so badly fjawodfc? When you are young your family is the center of your world. Go troll on reddit; there's no challenge here.

    September 7, 2011 at 02:35 | Report abuse | Reply
  4. Frank

    Everyone say prayers for these people and well wishes. That said, all please see FORKS OVER KNIVES and seriously use food as your medicine, at least my opinion. Reversing heart disease and so much more, who knows, perhaps this may even be of help to these little guys......all of us need to be Vegans. PLEASE, PLEASE look into what I am saying........for it is not just me and the results are real.......Thank you

    September 7, 2011 at 02:40 | Report abuse | Reply
    • Pedro

      While there is much validity in eating healthier for a better life, this is not known to reverse genetic disorders such as these two children have. It could potentially ease or allay symptoms, I do not know much about the condition, but I seriously doubt you do either. Pushing a tangential agenda, even if it is a healthy one, is somewhat trollish in the context of this article.

      September 7, 2011 at 19:58 | Report abuse |
    • Sarah

      Frank, it's called a GENETIC DISEASE!!!! This means that all the diets in the world cannot prevent or cure this condition and its found in the very genes that you and I carry. I guess that eating Vegan has deteriorated quite a few of your braincells to post such a comment. Maybe you should RESEARCH the condition before you open your mouth with this nonsense!

      September 10, 2011 at 09:46 | Report abuse |
    • Humane

      Frank, you are a moron. The next time you consider pushing your ignorant views here (or anywhere else, for that matter), please instead consider shoving something nicely tuberous up your nose. Thanks.

      September 11, 2011 at 20:48 | Report abuse |
  5. ankur suri

    may god give you strength and courage......I admire your courage......

    September 7, 2011 at 02:45 | Report abuse | Reply
  6. famblykittens

    God bless this family and give the parents the strength they need at the times when they need it the most. What a horrible, horrible thing it is that both of those darling boys have been struck with this disease.

    September 7, 2011 at 03:01 | Report abuse | Reply
    • Ezam

      I agree with you. Hold the children close. Love them always. Your note was the kindest. I appreciate that.

      September 8, 2011 at 23:23 | Report abuse |
    • imamommy2

      I agree. To the parents: My heart breaks for you also...I cry for you and the overwhelming sadness you must feel. I am so sorry. No child deserves to be sick and should be free to live and love and be happy. You are wonderful parents and doing what you think you can and loving them with every ounce of your being will imprint beautiful memories on your heart that will forever be with you... You are so brave and strong in the midst of this. Disregard any criticism you get for trying to help your children with medical care. You have to trust what you think is right and making decisions with all the love you have for them, you will know what is right. God bless you and your family. You are in my prayers.

      September 19, 2011 at 14:38 | Report abuse |
  7. dx2718

    Bad link warning! The site quoted is some sort of Asian thing, possibly even a virus. However, the people mentioned are real – only Ryan had MPS1, which has a better prognosis than MPS2, which is what the boys in this article have.

    September 7, 2011 at 03:11 | Report abuse | Reply
  8. Fiona

    MPS is an inherited genetic abnormality. That means one or both of the parents passed it on to the boys. There must be relatives or ancestors who suffered from the syndrome, so why didn't the parents get tested before conceiving those two wonderful boys? Think about this dispassionately (and without all those exclamation points and the wince-worthy use of the word "journey"): if you were breeding dogs of a breed that was known to carry certain genetic faults, you would be irresponsible not to test your breeding pairs to see whether they are carriers. If this couple had been tested, they could have made the unselfish choice to adopt children who need homes, rather than taking the risk of bringing two kids into the world who are doomed to suffer. And what about their sister? I'm so very sad for the boys, but I have far less compassion for their parents.

    September 7, 2011 at 03:17 | Report abuse | Reply
    • Jen

      This is an autosomal recessive disorder – MPS-II is passed by one parent. About 1 in 25000 babies are born with some form of this disease. Carrier screening does not screen for EVERY disorder – only certain ones. There was likely no way for the parents to anticipate having children with this disease. Genetic screening is not a routine medical procedure – typically only couples with a clear family history of a certain disease will go through carrier screening – not every couple considering having children. If there were other ancestors who died from this disease in the mother's family, they could have been from several generations in the past. You are a genetic carrier for all sorts of diseases. If you've had healthy children, you are lucky – stop being such a morally bankrupt, clueless nut.

      September 7, 2011 at 07:49 | Report abuse |
    • SoSueMe

      Thank you, Jen!!

      September 7, 2011 at 11:30 | Report abuse |
    • Joseph

      Mother's are often the carriers of this dreaded disease, but it can also occur by a mutation early on after conception that would not necessarily affect future pregancies. In this case the mother probably has one faulty gene and by bad luck both boys got the bad copy. Unless they had specific reason to look for this they wouldn't have prior to pregancy. It is entirely possible that the mutation started with her or she only has sisters or some other reason that would make this something that they wouldn;t think of screening for. They didn't even know that the first boy had it until the second one was already on the way. By the way, no one really cares if you have compassion for them or not...

      September 7, 2011 at 11:49 | Report abuse |
    • Vince

      Joseph hit the nail on the head. The mother in this story is most likely the first in her family to have this mutation. And Jen is correct too, screening doesn't apply to all diseases, especially a disease as rare as this. Some people like to comment and judge without truly understanding the subject. The point of this article is to enjoy the gift of life, it is fleeting, and do so with grace and dignity.

      September 7, 2011 at 14:49 | Report abuse |
    • Stephanie

      My deepest sympathy to the family for the pain they endure. There is always hope that through research, life can be extended, but its up to the family to decide what and how much they can endure. There is no point in wondering why future parents are not screened for genetic diseases because not only are there only so many you can screen for, but I can imagine children die now from causes we don't understand, but will be treatable in the future.

      Please know that God does not cause the diseases, nor does he hand them out to "teach" or punish. Life, death and suffering are part of living and within the natural laws of nature. With all the complexity involved in life forms, things go wrong. Sadly, in the human body, when things go wrong, its devastating to not just the victim, but their entire families. Its essetially a biological "roll of the dice". Somewhere an ancestor has a gene go haywire, there is the precedent, and now that gene can come back to the next generation or after. It is all we can do to help our friends and families through whatever tragedy they must deal with and be there for them when life hits the hardest.

      September 9, 2011 at 15:57 | Report abuse |
    • student

      This is the most ridiculous comment I've ever read on CNN.com.
      What others said. This is an extremely rare genetic illness. It's not like hip dysplasia in dogs, that you can easy test a dog for and then not breed, if they test positive. In most cases these types of genetic diseases come out of the blue. And even if she had ancestors with the disorder, most likely MPS was only discovered in the past 50 years or so. If a young child had this disease in 1900 and died shortly after, they would have attributed it to a whole variety of formerly common childhood illness, like influenza or rickets or something.

      Also, my mom has another rare genetic disorder, nemaline myopathy. Fortunately it is rather mild and does interfere with her ability to live a long, healthy life. (just makes her a bit slow). Several other relatives on my mom's side also have this condition, so I did some research to see if I am a carrier for the gene, but they have discovered dozens of genes responsible for this condition! So there's almost no way to tell which gene it is that causes the disease in my family. It may be the same for MPS. Sometimes there's not genetic test at all. If a specific gene for MPS II is identified, sure it would be prudent for other relatives to be tested, but it's ludicrous to accuse them of not taking proper precautions for a disease that I'm sure they didn't even know existed prior to conception.

      Moreover, we are all carriers for all sorts of genetic diseases, but most of the time your partner is not, so you don't spread the disorder. (this is why inbreeding is such a problem)

      September 10, 2011 at 00:32 | Report abuse |
  9. Sambvka

    May God Bless your family with all the love and precious moments that life has to offer. My heart breaks for you and your family. I will keep you and your family in my hearts and prayers always.

    September 7, 2011 at 03:18 | Report abuse | Reply
  10. Katharine

    As the mother of two children, I read this story with my heart breaking for the suffering of these two little boys and their parents. There is no silver lining here. I hope the husband and wife will be able to work together as a team to keep their own relationship strong and that their social network will help support them.

    September 7, 2011 at 08:04 | Report abuse | Reply
  11. EA

    i'll say a prayer for your family tonight. That God keep you strong and healthy and provide for you to take of of these challenges. if there's a way we can individually support financially please show us.

    September 7, 2011 at 08:07 | Report abuse | Reply
    • kathy


      September 11, 2011 at 21:52 | Report abuse |
  12. Karen

    Turning to God is a coping mechanism, a hope that SOMEONE has control of some kind over the situation. There are no Atheists on sinking ships or crashing planes. I have two boys who are now grown and living those lives we wanted so badly for them and helped them achieve. I cannot conceive the depth of your pain, as my boys' lives were never threatened like this. But I can offer what I learned from a quick, brutal cancer that consumed my father in 7 months time. Treatment sometimes eases the feelings of loss of control over your lives and your sons. At some point, tho', you realize the treatment stops being for them and all you are doing is prolonging a life no longer worth the living. The ultimate sacrifice for them is NOT to prolong that life, but to hold them as you let them go. You will be the ones left behind to carry their spirits on. Fight for them, advocate for them, and be strong enough to hold them as you let them go. You will know when that time comes.

    September 7, 2011 at 14:48 | Report abuse | Reply
  13. ania

    I am so sorry. As a mother my heart hurts for you. I cry for you.

    September 7, 2011 at 16:54 | Report abuse | Reply
  14. Alli

    One of my best friends growing up has Batten's disease. An also autosomal recessive fatal deteroating disease such as this one. Both her and her older sister have it. At the age of 23 their oldest passed away and their now 22 year old is close to the same fate. Some of my most fondest memories are growing up with them, playing on their farm, reading, getting all dolled up and laughing our butts off. What is most incredible is their parents. They have always had on a brave face and made the lives of their girls the most fullfilled and wonderful as humanly possible. My only advice to stay brave and enjoy every second imaginable. Also joining a support group with mothers and families going through the same thing has been very helpful. Best of luck to you and your family.

    September 7, 2011 at 17:54 | Report abuse | Reply
  15. Anon

    I would say "I am so sorry, bless you, God be with you", but it seems so shallow, so.....inadequate. So I will say with a big scream "This Just Stinks! These Little Boys! These Poor Little Guys!" Now.....what can I do to help? Find out about the disease and see if I can donate or volunteer.........Take action!

    September 7, 2011 at 18:34 | Report abuse | Reply
    • kathy

      http://www.letthembelittleX2.com or mpssociety.org

      September 11, 2011 at 21:53 | Report abuse |
  16. pray for my son


    September 7, 2011 at 19:15 | Report abuse | Reply
  17. Bad

    Is the daughter OK? I know this article was probably hastily written, but I found it difficult to understand. Is there a foundation for the boys? Can we help somehow?

    September 7, 2011 at 20:48 | Report abuse | Reply
    • kathy


      September 11, 2011 at 21:54 | Report abuse |
  18. karna

    My son was diagnosed with Hunters at age 2 and he is now 30 and doing ok. He was in the first drug study for Elaprase. I'm sure your boys are receiving it too, since you're going to UNC to see Dr Muenzer. Life is not over like you make it seem. You seem a little over dramatic to me, maybe looking for sympathy. You can get support at the MPS Society if you want. I've been there and am living it every day.

    September 7, 2011 at 22:24 | Report abuse | Reply
  19. Bria Rogers

    This Story Really Touched My Heart . I Will Keep You In My Prayers

    September 8, 2011 at 21:45 | Report abuse | Reply
  20. I Care

    Your children might be cured by doing the healing codes to them. I believe that there is always an answer to any question and a healing to any health issue. I highly recommend you to read and do Dr Alexander Lloyd's "The Healing Codes". Many have been cured of many diseases that have no know cure including the author.. This a gift and it will change your entire family..

    September 8, 2011 at 21:51 | Report abuse | Reply
  21. Jukia

    Excellent. Similar problems are discussed on the website http://www.shoolzdrav.ru

    September 9, 2011 at 05:28 | Report abuse | Reply
  22. Nick

    Your children are just adorable. I am sorry that this all had to happen....

    September 9, 2011 at 13:54 | Report abuse | Reply
  23. Cecil

    My sister lost both of her boys to hunters. One was 14 and the other was 17 . I cried when I saw this. Your boys look just like my nephews. There was no previous history in our family. I wish you well in your long hard journey. Dr. Munzer also treated them. Diet and other alternatives will not fix the problems with this syndrome. I'm so sorry.

    September 9, 2011 at 17:58 | Report abuse | Reply
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