“Wish Upon A Star” Today
Your support and encouragement helps us get through each day as we fight this battle against "Childhood Alzheimer’s. We started our "Million Wishes For A Cure" goal to beat Niemann Pick Type C and we need the world’s wishes and prayers to beat this fatal illness! Please make a wish for us today and circulate our message of hope for a cure.
May 6th, 2008 at 11:51 am
From one set of parents to another, we offer prayers. Our son Joshua was diagnosed with a metabolic disorder, Mitochondrial Disease Complex I OXPHOS. Had it not been for our pediatrician having a child with this life threatening illness, our son never would have been diagnosed. This disease presents as so many different diseases, alzimers disease being one of them and many disease of “old age”. I don’t know if your doctors have looked at metabolic disorders as something underlying in your twins but it is worth mentioning. It must be tested in a live muscle biopsy to get the best results possible even though that is not full proof. They now think it may be as common as 1 in 50 people having this rather then the 1 in 4000 that they thought had it up until a few months ago when the girl who had a reaction to her vaccinations became public. Just as your daughters did not show symptoms until after an illness, our son did not either. Most doctors miss slight symptoms and even larger ones due to lack of knowledge or prior beliefs regarding this disease. We wish you the best of luck finding a cure and will lift you all in our prayers. God Bless you all!
May 6th, 2008 at 7:59 am
Hello.
I’m a friend of Carla McGrew Jalbert. Carla and I have been the best of friends since the 2nd grade and she feels very strongly about your twins.
My heart absolutely breaks for you and your family. I don’t have much monies but would love to help you in any way possible. My phone number is 775-240-4189. Please feel free to contact me anytime. I will pray all of you.
Nancy Patton Opiniano
May 5th, 2008 at 6:34 am
I found your story on Kate Kirk’s Caring Bridge Site. Kate is a little girl who was undergoing treatment for NP disease at Duke University while my niece, Zoe, was there. Kate is doing well, according to her website. Your story broke my heart as I sat here on this Monday morning and read the all too familiar story of the NP plight. My niece passed away almost 2 years ago after complications from a lung infection. She had undergone 2 stem cell transplants at Duke. The first failed, but the second transplant worked, and her tiny body had even begun to generate new healthy cells that contained the enzyme she could not make for herself. Although Zoë is gone, her fight continues through the NP children all over.
Addi and Cassi are beautiful girls who are truly blessed to have parents who are fighting so diligently for their lives. I hope and pray that God will use your research and efforts to send a more effective treatment & cure for your children and all the other Addi’s, Cassi’s and Zoe’s of the world. That is my wish for you!
May 4th, 2008 at 2:25 pm
To your beautiful girls-
may god bless those two precious babies and watch over your family in this m0ot difficult time. To think that before today I had no idea NPC even existed! I have two children of my own, and I thank God for their health…my life will never be the same. what can I do to help? God help you and those beautiful girls.
May 3rd, 2008 at 8:29 pm
After watching your story and reading the information on your website, our hearts go out to your Beautiful Girls. Your story hits very close to my Heart, everything you said is very similar to our Daughter Alexis. We lost Alexis at the tender age of 5 to Juvenile Tay-Sachs Disease September 14,2006. The symptoms that your daughters are experiencing are the same issues we were dealing with, the doctors wre puzzled.Alexis had a cord blood transplant at Duke, we were introduced to 2 young girls with Niemann Pick who were having the same procedure. The Medical community is working to try and save our kids from the Terrible Diseases and without HOPE we have nothing. I am blessed with memories of Alexis that can never be taken, she is watching over me reminding me not to give up. I wish you and your family the very best, we will be thinking of you and remember we have HOPE for a cure. Craig
www.caringbridge.org/visit/alexismarkowich