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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.

CHERISH EVERY MOMENT!!!!
Our Journey Continues!


Filed under: Children's Health • Human Factor

soundoff (107 Responses)
  1. April

    As I was reading this article, my heart broke for you. I have two boys and a girl exactly your childrens' ages. Your strength and love for your family will serve you well. You will be in my prayers everyday from this day forward.

    September 6, 2011 at 18:26 | Report abuse | Reply
  2. Barbara Lombardo

    Deena and Jeff....my thots and prayers are with u, Jason, Justin, and Jordan....May God give you some sort of peace in ur hearts...nobody should have to be in this much emotional pain....you have a wonderful family....

    September 6, 2011 at 21:12 | Report abuse | Reply
  3. Vince

    I know how you feel and I'm sorry you have to go through a similar experience as our family. Our son was diagnosed with Duchenne Muscular Dystrophy(DMD) at the age of 18 months. Although the life expectancy for DMD is slightly longer, around 20 years of age, it is 100% fatal. He is now 9 and every birthday is bitter/sweet, but we remain positive and try to live each day to the fullest. Like you, we have a little healthy girl and she brings a lot of joy to our family.

    Your story is well written and expressed, I genuinely feel your pain. Know that even though there are only a couple of comments, due to the fact that most people don't know what to say, many people have read this article and are touched by your words. I'm sure your friends and family look to you for strength and perspective and admire you for your composure through it all. Continue to inspire others with your story and tribulations, they have much to learn from you and your family. Wishing you and yours the best.

    September 6, 2011 at 21:14 | Report abuse | Reply
    • Ethan

      very true I read this and wasn't going to post but had to to show support I have 3 kids, this is breaking.. try to be present, my heart is with these people!

      September 6, 2011 at 22:25 | Report abuse |
    • mimi

      you said exactly what i was looking to say, just couldnt find the words. thank you, vince. i am sorry for your little guy too. jus tlove him with everything you are. i know you do.

      September 6, 2011 at 23:23 | Report abuse |
    • SecrtSqurl

      You people are some of the most courageous people I have ever read about.

      September 7, 2011 at 01:15 | Report abuse |
  4. NCSouthernBelle

    My heart broke reading this; I am in tears right now. No parent, no child, should ever have to endure this with one child, let alone two.

    September 6, 2011 at 22:20 | Report abuse | Reply
  5. Jeanne

    Your story strengthens me to be thankful for all I have been given. Your ability to try to help others in your own time of need is motivational. I pray a cure is discovered for your little boys.

    September 6, 2011 at 22:27 | Report abuse | Reply
  6. miche

    Wow, when you are pregnant, you know of some of the things that can go wrong and you try to think about them too much. Then you have a beautiful, healthy baby and you think all is right with the world. When I read stories like this, it reminds me that there are so many things to fear that I've never even heard of before. But we can't live in fear. Even you, who are facing such worse case scenarios are mustering the strength to go on and that is truly amazing. I will pray for you and your children. I will pray for my own, hoping I never hear devastating news. I'm so sorry, words cannot even express it. I will think of your family often!

    September 6, 2011 at 22:28 | Report abuse | Reply
  7. Andrea

    I cannot imagine what you are going through. Thank you so much for sharing your story. My thoughts are with you and every happy day you have with your children.

    September 6, 2011 at 22:32 | Report abuse | Reply
  8. Grace

    I will pray for you and your family – their healing and your strength. Tonight our 3 year old son asked us what we'll do about our house when he is 100 years old (because he'll be physically bigger and was curious if our home would accommodate his size). I told him that when he is 100, we'll be in heaven waiting for him. He seemed surprised and said, "I just came from there before God sent me here". While we are a family that attends church, have deep faith in our christian faith, speak of Jesus with regularity and teach our children christian beliefs, we've never told him about a heaven that would have been his home prior to birth - only his mother's belly. We don't know where he came up with this. I say this to encourage you! Our ultimate home is in heaven. And your entire family has a place there and most especially your sweet boys. Thank you for your message of living each day in the moment. I truly am sorry for your pain. We will be praying for you.

    September 6, 2011 at 22:36 | Report abuse | Reply
  9. gerorge

    I dont have any kids yet, so i cant say i understand how u guys feel but i will surely pray for you guys.. nobody deserves to go thru such pain! May God bless you and you childeren..

    September 6, 2011 at 22:41 | Report abuse | Reply
  10. Emma

    I cant even begin to imagine what u are going through...May God give u strength for this is a difficult journey... I have to lil' boys myself..and the idea of losing them is unimaginable...Im so sorry...Your family is in my prayers...

    September 6, 2011 at 22:42 | Report abuse | Reply
  11. Teri

    I am sorry to hear of thie tragic illness affecting your family. My first and only grandson, Dylan, was diagnosed with Menkes Disease at 4 months of age. It is an illness that also mainly affects boys. It is a degenerative brain disease due to the lack of copper in the brain. Dylan passed away shortly after his 2nd birthday. Treasure the time you have with the boys and never give up fighting this terrible disease.

    September 6, 2011 at 22:43 | Report abuse | Reply
  12. Bayousara

    I hope this couple will have more children. They CAN get genetic counseling to try to avoid another boy with this same disease. I see that they had another child who turned out to be a girl, but it was the toss of the coin since they apparently aren't doing genetic counseling. I just don't see any point of risking yet another sick child who will suffer and die young when it doesn't have to be this way.

    September 6, 2011 at 22:44 | Report abuse | Reply
    • pjheads8

      fi you read it properly, you will find that baby #3 was on the way, when all the bad news occurred.

      September 6, 2011 at 23:21 | Report abuse |
    • dx2718

      Yes, but it means they did not test for the genes that cause this disorder while any of their kids were in eutero. Genetic counseling usually happens during or before pregnancy. If they knew this disorder ran in either of their families, they probably would have tested for it before even getting pregnant with #1, and then done amnio, etc. But genetic testing is, in general, not routine and not covered by insurance – and from the article it sounds like they had no clue the gene was running in Mom's family. Presumably she's got 1 bad x and 1 good one, so they have a 50% chance, should they conceive another boy, of him having the disease, and it may be possible to tell early enough to abort if they know to test for it.

      September 6, 2011 at 23:34 | Report abuse |
    • Le

      When I became preg at 37 the Dr's told me there was a 1:200 chance somethine would go wrong and before I even had time to think had me sign for all sorts of genetic testing. When I got home I thought what was the point- The BABY is on the way. Life and death is not for ME, a human, to choose. No douby this couple, full of life and love, feel the same way. They are heart broken to think of the death of their children- why would they have wanted to END their lives even sooner via abortion?! As a pediatric nurse I have seen many children thrive who were told by some doctor- they have no chance.

      September 7, 2011 at 00:42 | Report abuse |
  13. Kristie

    Truly, many are reading this and crying and have no idea what we could possibly say. God loves you and is crying with you. I am praying for you too. I imagine many are. God bless you and hold you and may you know his presence physically moment by moment. Cherish every moment!!!

    September 6, 2011 at 22:46 | Report abuse | Reply
  14. CP

    Deena & Jeff, it is heart-wrenching to hear your story and as a parent I cannot imagine having to face that outcome for my children. I am a medical researcher in the gene therapy field and it is stories like yours and many others' dealing with genetic disorders that make me motivated to go work every day and try to find cures for children like your boys. Clearly we cannot work fast enough!

    September 6, 2011 at 22:46 | Report abuse | Reply
  15. Greg

    The fatal part of this disease is extremely sad, and I wish you and your boys the very best that life has to offer for however long they are with you. My own daughter Danika was diagnosed with Glycogen Storage Disease Type II in the early 1990's and at the time it was fatal. I understand there is now a $300k/yr treatment that must be taken for life. When my daughter died at 6.5 months I was devastated. Sometimes (like now), but not always, it makes me cry that she is gone, I never even got to know her 😦

    Anyway, best of luck to all of you, and here is my hope for them to have extremely long lives...

    September 6, 2011 at 22:50 | Report abuse | Reply
  16. Amy

    My heart goes out to you. My nephew passed away from this terrible disease in 1991. Thankfully, I have two healthy boys, but I had to go through several agonizing months waiting for amnio results to determine that they were not affected. Thank you for sharing your story and for trying to help others.

    September 6, 2011 at 22:50 | Report abuse | Reply
  17. yolanda

    None of us knows how long we have or how long our families will be healthy. And so we must make each day count and find happiness and share love. Best wishes for joy in the time you have to be together.

    September 6, 2011 at 22:52 | Report abuse | Reply
  18. TBW

    Your story is heartbreaking- what can anyone say, even if they are going through the same thing? I have 2 babies, 3 and almost 2 years old and our 3rd is due in 3 weeks. Your writing was so candid that I was able to easily put myself in your shoes. It was terrifying and I can only say that I will pray for your boys and your little girl who is also going through all of this and especially for you and your husband– that you have the strength to face every day and put on that happy face to make the life of your little miracles as happy and wonderful and exciting as it should be for them. It can't be easy. I will think of you every time I lose my patience with my little guys and decide to be grateful for even those insane mommy moments. Stay strong. Praying for your family...miracles can happen...You sound like you deserve at least 2.

    September 6, 2011 at 23:00 | Report abuse | Reply
  19. LCSWquilter

    Thank you for so courageously sharing your family story. Despite the sadness, I hope you and your family can find comfort, joy, and peace in your time together. Sending hugs.

    September 6, 2011 at 23:03 | Report abuse | Reply
  20. Daniella

    What a heartbreaking story. Deeply moved. I think the central thing to learn from this courageous family is to always get genetic testing prior to having a baby even if both parents are perfectly healthy. I wonder if this awful disease could have been detected in utero. Let us all learn from this family's pain – get tested prior to starting a family, know what genetic diseases have existed in your family. I was born with a genetic disease that affects my muscles but fortunately it is not fatal, I just have some challenges. In 1969 when I was born, there was no testing or amnios – my parents could not have known. But now, there is no excuse. Get tested. I pray for this family – for some miracle to heal the boys. I have not heard of this syndrome and am grateful to be educated about it. I wish this family everything of the very best...my heart just breaks for them.

    September 6, 2011 at 23:09 | Report abuse | Reply
  21. Amanda

    The love you have for your family is so rare but so blessed! The best moments of life are the few and far in between. Those boys will know joy and happiness because of your strengths and your love. Deena... you are such a beautiful soul and an amazing mother for being so strong for those boys. Jeff your courage shines through your eyes and your tears. It is so heartbreaking but the love is something that will always be everlasting. I strongly believe in hope because without it... what is left? Hope is a beautiful thing even though if the moment has passed by. Still it is important.

    September 6, 2011 at 23:15 | Report abuse | Reply
  22. roberta

    words cannot express how i much sympathy i feel for ur tragedy!.i agree w/ the post above we are never promised tomorrow so live for today and know that many prayers are being sent to ur family. Hopefully w/ all the medical advances they can find a cure for ur sons. U are a great couple to share ur story and i will keep u in my thoughts and prayers.

    September 6, 2011 at 23:16 | Report abuse | Reply
  23. Noelia

    My god hold you all close to his heart and give you the strength for every day. Cherish the days, pray into the night and know you will get through this.

    September 6, 2011 at 23:17 | Report abuse | Reply
  24. Mary

    I wish I had something truly profound to say to you brave and wonderful parents. What a tragic and sad situation. All I can add to all that has been said is do as you are doing, live each day and may God give you the strength to face each day with some hope. Know that many prayers are being sent your way.

    September 6, 2011 at 23:17 | Report abuse | Reply
  25. Susan

    As I read this story, I relived the story of my aunt and uncle. They had a son, and then a daughter, and gradually they realized that something was terribly wrong with their children. They were both diagnosed with a rare genetic disease – polycystic kidney disease. It was a combination of their genes that produced this result. We learned after the fact that with each pregnancy there was a 25% chance that a child would be affected. They already had two with the disease and my aunt was pregnant with her third child. Being a strict Catholic, she was not allowed to abort the pregnancy. My third cousin, a girl, was born with the disease as well. It was heartbreaking. The middle child, a girl, died first at age 9. The oldest, a boy, lived until age 12, and the youngest died at age 7. It changed all of our lives. I can't imagine what my aunt and uncle must have gone through. My heart breaks for your family as well. I hope you are able to treasure the time you have with them. I'm so sorry.

    September 6, 2011 at 23:18 | Report abuse | Reply
    • Le

      Susan, that is profoundly sad indeed but I am sure each child had a special gift to give in his/her short life. It is hard to tell from your note whether or not you had any direct contact with these cousins. Do you think your aunt and uncle would still say it would have been better that they had never been born due to abortion?

      September 7, 2011 at 00:59 | Report abuse |
  26. Mare0568

    I just have no words other than to tell you that my stomach hurts reading your story. I am beyond sorry and my heart just aches for you terribly. Because of numerous tragedies experienced in our family - and the loss of some very close school friends to my children - I do truly cherish every single day with my children. My husband can't understand why I still get up with them in the morning for school - when my son is a junior and my daughter just entered college (commuting) but I don't want to ever risk having not told them I loved them, told them to be careful, etc., all because I decided to not see them leave because I stayed in bed longer. You just never know when you may lose someone. Please know that my thoughts and prayers are with you a million times over. It's so sad to see parents who so love their children so very much and want them so badly and then have to face something like this. There are so many parents that just keep having children and don't care at all what happens to them, neglect them, abuse them, etc. May you all have the strength to get through this.

    September 6, 2011 at 23:20 | Report abuse | Reply
  27. tray117

    Laid off 3 years ago, ran through unemployment, ran through my 401k keeping a roof over my head, cannot find a job, will probably be forclosed on early next year and I need to be THANKFUL after reading your horrific story. I'm so sorry for your pain and I will say a prayer for your family. Please have someone take your story to Congress for funding/research.

    September 6, 2011 at 23:25 | Report abuse | Reply
  28. Christine

    I admire your strength and courage to share your story. Although I can try, I cannot truly imagine what you and your family are going through. We all have our life's struggles but there is something about when these type of events happen to innocent children that make it all the more heartbreaking. I hope that your family finds the strength to make it through the difficult times. And may there be many more happy times and memories to come.

    September 6, 2011 at 23:30 | Report abuse | Reply
  29. JehseaLynn

    Deena & Jeff: My tears have dried. I do not believe my heart will ever stop aching. What a horrendous fate befell your angels, and worse, for you that must watch them suffer. As parents, we know that we must teach our children to live well, responsibly, and joyfully; but we never think we will be called upon to teach them how to die with grace and dignity. My heart is torn for your family and the challenges you face. I will always – *always* – pray for you, Jason, Justin, and Jordan, each night, that you all had a good day, that it had some moments of joy, and that God reminds you He is still in the room. I will also pray for a cure. God Bless you all.

    September 6, 2011 at 23:33 | Report abuse | Reply
  30. dd2874

    What can I say? What a strong spirit you and your family have. While my heart broke reading your story, it teaches everyone who reads this about how important family is and how trivial other annoyances in life really are! Thank you for sharing your story, I will be thinking of you all!

    September 6, 2011 at 23:39 | Report abuse | Reply
  31. daledoo

    This is so sad. Yet another disease with no cure. If I could trade places with your sons I would. People need to set up support groups even if only on the internet. Till I read this I never saw any thing about it.

    September 7, 2011 at 00:08 | Report abuse | Reply
  32. Dawn

    My heart is breaking as I read your story, and the tears are streaming down my face. I can only imagine the pain you face every day. You did not mention whether you are Christian, or have any faith to help sustain you. I pray that whatever the case is, that God would hold you close and bless your efforts to give your precious children the best life possible. May He fill you with the peace and hope of knowing that He loves you and your beautiful family, and has a perfect, healthy forever planned for all of you in Heaven with Him.

    September 7, 2011 at 00:09 | Report abuse | Reply
  33. Ellie

    There, but for the grace of God, go any of us. Your story is beautifully written and has made me think, yet again, how lucky I am despite what I perceive to be problems in my life. Compared to yours, they're nothing and I needed that slap upside my head. I pray fervently for the health and happiness of your precious boys as well as strength and faith for you and your husband. I cannot even imagine the horror and pain you are going through. May God bless and heal your babies and may you know He stands next to you and will help you thru this.

    September 7, 2011 at 00:15 | Report abuse | Reply
  34. sheryl gilman

    I had 3 girls with MPSIII or San Filippo Syndrome. They have since died but I made their life as full as possible. I look forward to seeing them in the resurrection of the dead, whole and intelligent and happy!

    September 7, 2011 at 00:15 | Report abuse | Reply
  35. Francisco

    Muchas gracias por compartir con el mundo su historia de amor y valentia. Tengo dos hijas, y no puedo imaginar una vispda sin ellas. Me impresiona su tenacidad y valentia, y rezare por ustedes y su felicidad. Best regards

    September 7, 2011 at 00:30 | Report abuse | Reply
  36. elle

    What terrible news. This reminds me of the film Lorenzo's oil, where the parents of an afflicted boy developed a treatment for a similar disease. But, obviously, its not the same disease. I'm agnostic. I dont know what it all means, if anything. But enjoy them and everyone wishes you the best.

    September 7, 2011 at 00:32 | Report abuse | Reply
  37. Nick

    Sorry, a word you will hear to often will never be enough. I lost my son at 1 month to pneumonia, the pain of that day still bleeds in my heart. I will never be able to recover that love, the dreams as you say, for that child dashed in a moments time. Even before I could try to perform CPR, his little body could not handle the sickness put on him at such a frail moment in life. I fell to my knees, in denial, pleading that this was just a dream, but it wasn't. This was an all to real nightmare. I am tearing up thinking how hard it would be to not have this in an instant, to know that in the future, I would have to face this. Be not alone, there are thousands of other parents facing similar, if not the same, problems. I know you reached out here, but reach out every day. Losing the precious little lives we call our children, this is the only thing in my life that I felt almost broke me to no repair. You are being wonderful, loving parents. Strong, willful adults. Never let them know how much you hurt, even when the tears start flowing. Let them live the best they can, remember, if not here forever, they are forever in your hearts.

    September 7, 2011 at 00:45 | Report abuse | Reply
  38. Angie

    Deena and Jeff,
    May God bless you, your precious children and your entire family. I will pray for a miracle for your children and strength for you each to endure the physical and emotional pain of this disease. I will pray for you all to have an abundance of love on this sad journey, happy times making family memories, and an evergrowing faith to sustain you.

    September 7, 2011 at 00:48 | Report abuse | Reply
  39. trixen

    This has to be the most heartbreaking story I've read all year.

    September 7, 2011 at 00:49 | Report abuse | Reply
  40. Roe

    I would just like to say that you are my heroes. I will never again take a second of my life for granted. Nor will I ever have the audacity to feel sorry for myself. There will never be another day where I don't tell the people who mean the world to me I Love You!!! I am a better person for having read this and I Thank You for sharing it through your pain. You are all amazing.

    September 7, 2011 at 00:51 | Report abuse | Reply
  41. David Y

    My heart broke when I read this article. You are wonderful parents, and any child would be very fortunate to have your love. Best regards.

    September 7, 2011 at 00:51 | Report abuse | Reply
  42. segundooron

    As a physician, I have indeed studied the disease your little boys have. My heart absloutely broke when I read this story. My heart breaks every time I have to tell any family news similar to what you have had to hear. My prayers go out to you for many things. First, to have strength to endure and secondly, the doctors at UNC hospital are able to come up with some way to manage this horrible disease. I will never forget reading this story and I wish every physician I knew would read it just to calibrate their compassion skills.

    Again, you and those boys and your daughter are in my prayers.
    Dr. Ron

    September 7, 2011 at 00:52 | Report abuse | Reply
  43. annie

    Your story really touched my heart. Will lift you all up in prayers tonight. aagod bless

    September 7, 2011 at 00:55 | Report abuse | Reply
  44. Marie

    This is the Facebook page of Simon Ibell, a Canadian with MPS II. He is in his mid-twenties and a wonderful activist for those who suffer from this disease.
    https://www.facebook.com/simon.ibell?sk=wall
    An article about him http://www.thestar.com/article/660737
    My heart goes out for you and your family. I wish Simon's story will help you keep your hopes high.

    September 7, 2011 at 01:03 | Report abuse | Reply
  45. PS

    Hinduism and Buddhism preaches that none of us are born with any connection, ownership or bondage to one another. Those that are near and dear to us are just gifts that need to be cherished and allowed to return to where they came from. Our life is transitory. We can only relish who we have for however long we have. Be happy for your boys and they will see happiness around their beautiful lives.

    September 7, 2011 at 01:12 | Report abuse | Reply
  46. Angie

    Am sad that everyone is writing of how sad they all are for this family. We dont have to be sad for those sweet children because I know there is a God who can heal those boys. Prayer works miracles. Jesus is the ultimate healer. Those boys dont have to die, Jesus can heal them. Am sorry for preaching but I have seen many get healed on their death bed when doctors said their deaths were inevitable. Iam praying for the boys and I know Jesus will heal their sons.

    September 7, 2011 at 01:15 | Report abuse | Reply
  47. Elettra

    Thank you for sharing your story. My heart is with you and I will keep you and your precious family in my thoughts and prayers. May the grace of God fortify and sustain you. I will pray for miracles and good science and mostly that you will find comfort and healing. You are truly an inspiration. I do believe in miracles and beating the odds. Perhaps someday we will read of your beautiful boys' valiant triumph over this most terrible illness. God bless you.

    September 7, 2011 at 01:26 | Report abuse | Reply
  48. shawna Portner

    this is my first post and I really am lost for words. I will pray for you and your lovely family. I pledge to show my love towards my kids more, to hug them more, to smell the roses more, everything just MORE. – thank you for sharing. May God Bless you all. xo Shawna and family.

    September 7, 2011 at 01:39 | Report abuse | Reply
  49. louise

    What a heart breaking story but at the same time your strength and love is awesomely inspiring. it is extremely humbling to read about and "feel" the emotions you deal with on a day-to-day basis. as a mother my heart goes out to you all and i wish you strength and comfort for the years ahead. you are all in my thoughts and prayers and as someone else mentioned above, know that there are MANY, MANY more people out there who have been unbelievably moved by your story.

    September 7, 2011 at 01:42 | Report abuse | Reply
  50. dean mccurry

    Go to http://www.ryanfoundation.com reach out to mark dant..ryan's father..his son ryan had MPS and wasn't suppose to live poast 3 and is now21

    September 7, 2011 at 01:45 | Report abuse | Reply
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.