Wednesday, July 15, 2009

Carter Week is On Hold...

This week was supposed to have all these positive posts about Carter, but I need to interrupt that.

There is something I would like to share. I sat here for quite a while wondering how to word this, how to phrase it, what exactly I should write. The simple fact is I am not really sure WHAT to write, or how to, but I need to.

My wife and her sister are friends with a young woman named Kelly. Around 8 months ago Kelly and her husband Zachary delivered a beautiful boy named Lincoln Lewis Wheatley into this world. This past Monday, July 13th, he died.

Lincoln had a very rare disease, one that affects maybe 1 in every 100,000 children in the world, called Type II Gaucher's Disease. Gaucher disease is an inherited metabolic disorder in which harmful quantities of a fatty substance called glucocerebroside accumulate in the spleen, liver, lungs, bone marrow, and sometimes in the brain. Most children with Type II Gaucher do not survive past the age of 2.

Mind you that they had NO diagnosis at all from the local Children's Hospital (that we stopped going to months ago) even though he had issues gaining weight even at the 2 month mark, struggled with his health, etc. He had been getting more ill over the past couple of months and during the last hospitalization the doctors there figured out what was wrong. They said they had never seen a case of Gaucher, ever.

I'd like to share the obituary here if you don't mind, written, I think, by his parents.

Lincoln Lewis Wheatley age 8 months, passed away peacefully in his mother and father’s arms on Monday, July 13, 2009 at Nationwide Children’s Hospital. Lincoln had a vibrant personality and a great smile. He had an everlasting impact in his short time with us. He will be greatly missed and will always be in our hearts. Lincoln is survived by his mother and father Zachary and Kelly (Dennison) Wheatley, grandparents Rick and Chris Dennison, Gary Wheatley and Cheryl (Weibush) Wheatley, great grandparents John and Twila Hill and Helen Dennison, Uncle Bart and Aunt Kristina Dennison, Uncle Nate and Aunt Heidi Dennison, Aunt Tiffany and Uncle Glen Lightfoot, cousins, Camryn, Brooklyn and Ramsey Family will receive friends Thursday from 2-4 and 6-8 PM at Schoedinger Worthington Chapel, 6699 N. High St. (1/2 mile south of I-270). Funeral service will be Friday at 10 AM with burial to follow in Kingwood Memorial Park. Lincoln was recently diagnosed with a rare disorder known as Gaucher Disease. In Lincoln’s memory, memorial contributions may be made to the Lincoln Lewis Wheatley Memorial Fund, proceeds to benefit the Children’s Gaucher Research Fund. Online condolences may be made to www.schoedinger.com.

What an awful, awful thing. I just can't wrap my head around why so many children have to suffer. It makes no sense to me at all. At all.

14 comments:

  1. So sorry to hear about little Lincoln's passing. Like you, I will never understand the purpose of these little innocent children suffering with horrible diseases. I know, I know, someone has to suffer them in order to study and perhaps cure them, but c'mon...innocent children?? Really? Is that a necessity? Granted, I don't want an adult to go through it either, but if it was my family, I'd rather suffer a disease than have my child do so.

    My heart goes out to Lincoln's family and friends.

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  2. Whenever I hear about the death or suffering of a child it makes me run to the side of my own and enjoy and appreciate the time I have, however long or short that may be.
    So very sorry for the Lincoln's loss.
    I don't understand either.

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  3. Hearing such a heartbreaking story like that is one of the only times that I actually feel lucky to be dealing with seizures. Because at least I have him here with me.

    That has to be the single most hardest thing a parent could ever face.

    My heart is with them.

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  4. I'm so sorry for this tragedy hitting your already devastated family. My thoughts are with you.

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  5. Wow, how sad. My heart goes out to that angel baby's family. It just seems so..I don't know..wrong I guess. So terribly wrong. No parent should ever have to survive their child. I hope you and your family are able to hang in there and weather this most recent blow. I look forward to seeing more Carter updates (if you choose to do more) after you've had a chance to try and process this.

    Karen

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  6. I am so sorry for your loss. Lincoln is now with our daughter, Aaliyah, in heaven as she too has passed from Gaucher disease type II. Our thoughts and prayers are with you.

    God Bless,

    Liz
    Aaliyah Heinzelman
    7/15/05 ~ 6/26/08
    Carepages.com/carepages/babyaaliyah

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  7. I wish,there's that word again,that I had the answer as to the why's.I truly look to plan and purpose and hope, at the end of my life that I will see,with great clarity,the reasons.For me,having been dropped into the world of suffering and sadness and death and dying,2 1/2 years ago,I had two choices,number one let it consume and take from me my faith and belief in the ultimate beauty and good in this life or,take the journeys of others,their precious children,as well as the path of my own daughter, and let them show me the way.I chose number two and it has been extremely difficult in many moments to hold on to it.May Lincoln's family find peace and strength in the example of their beautiful son and may you and your wife garner your very own strength from the road traveled by this precious little guy.

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  8. Whenever someone dies, the saddest thing of all is everything they never did, and never contributed to. That is especially true when a child dies, because that's about 80 years of life that weren't lived, and that a lot of potential going out the window.

    From very early, and from several reasons, I never wanted to have kids, and I still don't, and one of the reasons for that, is the fact that I know wouldn't be able to surpass the death of a child of mine, so I can only guess what those parents are going through.

    On a more practical note, future pregnancies should be very well planed, and they could have another child with the exact same problem, because what makes it rare is the fact that both parents have to be carriers in order for a child to have it, and since we know they are because Lincoln had it. If they want more children they should pan it very well, so this doesn't happen again.

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  9. There's nothing really I can say here that's going to be even marginally helpful. What an incredible waste. I'm so sorry.

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  10. I have gone through death after death after death with young friends of Colby's over these 24 years...Two in particular who's moms were my best friends....

    I KNOW how this hurts you and your family....And, if you are anything like me, I KNOW how this scares you....If it can happen to them, it can happen to mine...

    There is no explanation for this...No reason...And there are no words that I could ever find to make you and Jen feel any better....

    I am just so, so sorry....

    Cyndi

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  11. To All Who Posted:
    Thanks for your kind replies, I am sure that their family would appreciate knowing your sentiments.

    I am not an eloquent man. Not at all. So it shouldn't surprise you when I say just simply that death sucks. A lot.

    Thanks again for all your very thoughtful remarks.

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  12. The suffering and death of children is something I never wanted to know about. Once we got thrown into the cancer world, suddenly I became aware of children dying around us all the time. One of our best "cancer buddies" at our hospital in Charlotte died last week. I am having a hard time even processing it. Kids we know keep relapsing, only to have to go through more grueling and sickening chemotherapy and radiation.

    Then we joined the IS community and now I am aware of so much more suffering. It just makes me feel so angry and helpless. I vow that someday when everyday with my baby isn't such a struggle that I will do something to help. I am not sure in what capacity, but I will do something.

    I, like Telmo above, had sworn at an early age not to have kids, because I am incredibly controlling. The thought of nor being able to control the health or future of my child scared the shit out of me. So I am living my own nightmare. But I wouldn't trade it for anything.....this amazing child has brought me more joy than I could have ever imagined. I just pray that someday she will be healed and not have to suffer any more.

    I am so sorry for Lincoln's parents for what they have endured already and the pain that will be with them forever. I will never understand why so many children suffer.

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  13. I came across your blog tonight, and it hit me quite hard. My 12-month-old daughter also has neuronopathic Gaucher's disease, and you are right, this disease sucks. My heart breaks for Lincoln and his family.

    Carrie
    http://www.littlemisshannah.com

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