Many of you are aware that my youngest daughter has special needs. I have spoken alot about her heart transplant, and developmental delays- I have never really explained what causes those issues in her little body.
Imagine a major city with half its power plants shut down. At best, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency.
Now imagine your body with one-half of its energy producing facilities shut down. The brain would be impaired, vision would be dim, muscles would twitch spastically or would be too weak to allow your body to walk or write, your heart would be weakened, and you would not be able to eat and digest your food.
For large numbers of people, especially children, this is precisely the situation in which they find themselves due to defects in the mitochondria, organelles found in every cell of the body which are responsible for the body’s energy production. Mitochondrial diseases compromise their lives and can be fatal – umdf.org
Every year 1,000 to 4,000 children, from newborns up to age 10, are attacked by mitochondrial disease- yet so many people have no idea, or have never heard of this disease.
The Facts about Mitochondrial Disease.
Mitochondrial disease is incurable. One in every 2,000 babies born will develop a mitochondrial disease in their lifetime. Half will develop the disease before their 5th birthday. Mitochondrial disease is nearly as common as childhood cancer. Recent research results indicate that mitochondrial dysfunction is a large factor in degenerative disorders of aging like diabetes, heart disease, Parkinson’s and Alzheimer’s. There is little federal or state funding to support mitochondrial disease. New testing methods developed during the past ten years have advanced the diagnosis of some mitochondrial diseases. Many mitochondrial disease patients go undiagnosed and, as a result, these patients and their families suffer. It is precisely this combination of “newness†and diagnostic difficulty that works against recognition of mitochondrial disease and the finding of an effective cure. The consequences of this genetic disorder can be devastating to those afflicted and their families. – WishUponACure.org
Currently, there are no known cures. The treatments that are available are limited, and only slow the progression of the disease in a small percentage of patients. Most treatments and medications address only symptoms of the mitochondrial disorder, not the disorder itself. Current supplements used for sufferers include Coenzyme Q10, carnitine, niacin, thiamine, biotin and riboflavin. Special diets can be helpful, but only with a thorough medical evaluation, best carried out in a center familiar with mitochondrial disease, can the optimal treatment regime be determined for each patient.
Emmas current Medications are as follows: (M-Mito related / H-Heart related)
Carnitor (4x daily) -M
Coenzyme Q10 (3x daily) -M
Complex B Supplements (1x daily) -M
Captopril (2x daily) -H
Cyclosporin (2x daily) -H
Digoxin (1x daily) -H
Lasix (1x daily) -H
Cyclosporin (3x Daily) -H
Rapimmune (1x Daily) -H
Emma has been effected in many ways because of this disease, her heart being the most tragic. She has also suffered from seizures, complex developmental delays, speech regression, neurological issues, sleep issues, kidney issues and liver issues. It has also effected her growth and nutrition.
Most children with Mitochondrial disease do not live long. Her father and I have come to terms with that. I have talked alot about my struggle with her disease. We both know that one day her time with us will be over and Christ will call her home. If this experience has taught us anything, we have learned to cherish every moment. The horrible thing about this disease is that you never know what to expect. I know a father who was playing soccer with his son one night, and the next morning he had passed away. It is different for every child, no 2 children have the same symptoms. There is no roadmap, no directions. It has been called the “hopeless disease” by many professionals. Thus my claiming “hope is necessary in all circumstances” for this blog.
I was once asked by a blogger (in a not so nice way) where my identity was before my daughter. I know that the majority of my life right now is wrapped up in her little body. I know that there are times that I spend more time with her than my older children, I know that I sometimes find myself talking more about her than my other children- I am fully aware of those things and struggle with the reality of those circumstances. Those parents who have children with terminal diagnosis will attest to the fact that we end up enveloping ourselves around them- its all we can do. I make no apologies for that- Any parent in my position would do the same thing.
Emma may never run and play like the other kids, she may never talk like the other kids her age- her father and I are okay with that. We would have loved to have a healthy “normal” child- but we are so very honored and humbled that we were chosen to be her parents.
She has taught us so much more than we will ever be able to teach her.
Now, as her mom I have a request. I have done this before with other blogs I have been on. If you would like to help share her story, please consider putting the button (below) on your blog sidebar and link it back to this post. If you did add it, please leave me a comment so I can thank you.
Of course I will put sweet Emma on my site.
It’s up!
Wow Heather. I’m speechless. This is the first time I’ve felt I understand what Emma’s going through. Without getting carried away, let me say this. I pity the person who left that comment for you. No one, no one, should ever judge you until they’ve walked your path.
I cannot put this button in my sidebar quickly enough. However. Ahem. I can put the button there but I still haven’t figured out how to link it to the post. So if I were to PROMISE not to ask you for wedding planning advice, would you mind emailing me with some guidance? I removed my email address from my profile so I’m hoping you can email me from this comment. Oh, the things I still don’t know about blogginess!
I so understand that you concentrate more on Emma than your other children. And I’m sure they understand, too. You’ll never know how much I admire your strength.
I don’t have a blog, but I have a myspace site. Is it possible to do it from there? You know that I would love to have this button on my site. I love Emma and will be praying for her always.
I could not get the button up for your sweet daughter fast enough. This is a wonderful idea, and I’m honored that you will let us help you in this way and keep y’all in our prayers! Thanks for sharing your story. Of course much of your identity is tied in with her. She is a beautiful part of what makes you who you are.
Blessings!
Emma is in my sidebar, Heather. And I must say, she looks real cute there. She’s a little doll.
I would be honored to have sweet Emma grace my site(no pun intended) I have to get Laura to do it for me if she will. When I do it she would end up in cyber space somewhere. I will get it as soon as I can. Until then she and you are always in my prayers.
I’ve added Emma’s button to my blog sidebar — what a privilege to do so. She’s such a sweetie! You all will be in my prayers.
She is in my sidebar. I pray Emma will flourish, despite all the setacks and that the Lord will continue to give you His grace.
I’ve added her to my sidebar. I had to modify the size slightly so it would fit, hope that’s okay. I’m praying for you both and love you.
What a great idea! I would be honored to add her button to my sidebar.
Just put Emma grace up on my side bar. Now I will be reminded to pray.
done!! Praying for this sweet child.
I just added that sweet girl to my sidebar too. What a great reminder to pray! Youa re a great Mom!
Blessings to the both of you!
Awwwwwwwwwwwwwwww I just came to my site and Emma Grace is there!!! Thank you sweet Laura.
Just wanted you to know how much your post touched my heart. I’ve put your graphic up on my sidebar just now and praying for you and Emma and family. Will add a post this week to rally even more prayer support for you. What a wonderful mother you are–sending hugs!
I’ve done a post to encourage people to read this and put Emma’s button in their sidebar. I suspect we’re going to see her sweet little face all over bloggityville. Amazing things can happen when the prayer warriors step in.
Just wanted to let you know that I added her button to my myspace site! I’m so glad I was able to.
That is the cutest button I have ever seen!!!
I am so honored to have it on our site and I’m glad it will remind me daily to pray for your little girl and for all the other children suffering with that disease.
All the best!
ps. And about being wrapped in your daughter’s identity… I should hope you would be. She is here for you to treasure and support with all your strength. God gave her you because He knew you’d lose yourself in her!
I’ve just come over from Barb’s blog and I must say, tears are flowing freely right now! What your little girl has is something I’ve never heard of before so thank you so much for making me (and others) aware of this terrible illness. Of course I will add Emma’s button to my blog…the more people that can be educated about this, the better! Hugs to you & Emma!!
Heather, I’m here by way of Barb. After reading about your precious little daughter I am honored to be able to place her button on my blog. God Bless Emma Grace, you and your family.
Diane
I added the Emma Grace button to my template. I’ll be praying for her and for you! God bless!
Susanne
I followed a link to your site from Barb over at “A Chelsea Morning” – you’re right – this is something I would think most people have never heard of; I know I haven’t. My daughter also has special needs and we feel blessed as well to be her parents.
I will be keeping your sweet Emma in my prayers; and I can’t imagine anyone faulting you for being so wrapped up in her life…I agree…what parent wouldn’t be in that situation!
I will try to update my blog later today and add her link to my sidebar.
Thank you for sharing your story.
Hi,
I just came over from Barb’s and Pea’s blog. I’ve read this very moving story of your precious child. She’ll be in my prayers and I’ll be happy to add your button to my sidebar.
Hugs to you and Emma Grace!
Heather,
I’m back again. Sorry but when I put the button in my sidebar it caused my whole sidebar to fall apart. I had to remove it, but please know your family will be in my prayers, button or no button…
Praying for Emma Grace and your entire family! She is in my sidebar!!!!
I got her over here at Bullfrogs n Butterflies! I think she fits perfect there. Don’t you? Thanks for sharing your story and I will pray for her everytime I come to my site! What an honor this is…Prayers to you and your family!
Little Emma’s button has been added to my sidebar. I’m thrilled to be able to highlight this beautiful girl on my blog. Our prayers are with you!
I’ll be praying for Emma Grace and for your whole family!
I’ve also added Emma’s button in my sidebar.
Thanks Heather for the tall button! Emma is at the Garden and in my prayers as always!
Hi Heather, Emma is on my sidebar now xx
I came here from Pea’s blog.Your daughter is beautiful and very blessed to have such a caring family. I’ve put her button on Austins Blog:)
Just added it to my blog. I surfed over from boomama’s site. Praying now for God’s grace for your family.
I don’t need your thanks, I just wanted to let you know that I have added your link in my sidebar. Just wanted to know that I was helping (the little that I can) to help bring more awareness for this terrible disease.
Thanks for courageously sharing your story!
Valerie
I am praying for Grace. I have added the button to my blog, and also you blog to my list of blogs I like to read.
Blessings!
i just placed a link on myspace, in my blog section, so that everybody i know can view it. i am so sorry to hear that about your daughter, i would be so lost if my son had anything, if he did, i know that there would be alot of people out there to pray. I am praying for little Emma. I hope everything goes well.
I’ve added Emma to my site too. I had no idea this was a real disease- the only time I’ve ever heard of it was reading Madeline L’Engle books as a kid. I will definitely be praying for her.
Hi sis, wow, I didn’t realize you had another blog. I have the old button to the old blog. I will put this one on there if you want me too. but I won’t put it up unless you ask me to. K?
Hope you all are well, and I miss you.
Cat
It is an honor to have her sweet face on our blog and the constant reminder to keep her and your family in our prayers.
Do not be bothered by that comment that person left. You are a wonderful mother doing an incredible job for your entire family and i am sure all your children agree. (As the “sick kid” in my family, I received the special treatment that goes along with the doctors appointments, extra care and worry that a child gets. It is only natural and totally necessary. A mother has to to do what she has to do. And you are doing a WONDERFUL job!)
You are an inspiration to us!
Hi…I just came over from Pea’s Corner. I’ve added Emma’s button. My thoughts are with you
Heather,
I’ve added Emma Grace to my sidebar. My prays are with you!!
I am adding Emma Grace…..
I will keep her in my thoughts and prayers!
Hugs to your family
~Lindsay
you dind’t have to ask, it is done! Please email me and let me know what else I can do!
May God’s grace be with you day in and day out. May you find peace resting in the palm of God’s hand. May the joy your daughter brings you ease the pain of her illness. And, if the day comes that God brings her home to him, may you rejoice that she is with God and knows only joy and peace.
I’ve put her button on my sidebar. (It really helps to have the codes – thanks!)
I happened to find your site due to one of the links on the sidebars (don’t know how to put one in myself right now as I’m using a premade template on my blog). Your little girl is just beautiful! Thank you for making me aware of something I had not known about. Your post brought tears to my eyes. My oldest daughter is currently facing issues with her heart and we are going to see a geneticist as to the cause. They believe it may be hereditary and a syndrome that many don’t know about either. We haven’t shared about it on our blog yet but may someday. Thank you for opening my eyes to another issue of concern in this world. Enjoy every moment with your precious Emma Grace . . . a beautiful name. :0)
I posted my story here at http://robertsfamilyonline.blogspot.com/2006/07/when-doctors-get-it-wrong.html
I thought what I went through was tough, but reading your story has inspired me! God has blessed you with an amazing heart!
Heather, it will be my honor to put the button up on my page. I pray for Emma all the time, and get periodical updates from Rebecca. God Bless, Tammy
I just put the button on my blog!
Dear Heather,
I put the button up several weeks ago and forgot to email you. I just read your latest post and my heart goes out to you. I have no idea what you go through, but our Lord does. He is there right beside you through all the joys and triumphs and through all the pain and suffering. May he wrap his peace around you and your sweet family. I know at times its hard to beleive in the verse…”he will never give you more than what you can handle.” But it is true….you are such a strong woman, although I don’t know you, you must be strong or the Lord would not have chosen you to be Emma’s mommy. Bless you, your spirit, your emotions, bless you physically and mentally. We are here praying.
Much love,
The Fisher Family
Thank you for sharing her story and thank you for the video…I can’t imagine and you ahve given me a new perspective with my own children.
i put your beautiful emma’s button on my blog. i hd no idea you were going thru this. i’ll add you to my prayers also.