Make A Wish For Addi and Cassi Today
Your support and encouragement helps us get through each day as we fight our battle against Niemann Pick Type C, the “Childhood Alzheimer’s.” We read all messages posted to our family and while we may not be able to respond to each message, your messages are very touching. Thank you to everyone around the world who has posted on our Wishes Board.
I just saw your story on the Doctors and it had a huge impact on me. I found myself in tears over your beautiful daughters and what you must be going through. I will be praying for a cure!! God bless you for the strength that you have.
My thoughts and prayers will be with you and those little angels of yours!
I am sitting here crying after watching your struggle. I myself have Multiple Sclerosis and have cognitive problems, so I know how frustrating it is for me. I can’t imagine how it is for a 4 year old! Or even worse, to be the parent watching that happen to your children. I wish I could give you a magic cure!!! I do not that plaquenil has been a miracle job for me. It is not used for MS I was put on it because I also have Sjogrens Syndrome, but since taking the Plaquenil my MS has not progressed at all after being very progressive while taking the recomended MS drugs. I know that you will find something, your fighting spirit is amazing and your children are lucky to have you. If ever there is anything that I can do to help, please do not hesitate. We have a home 2 hours from NYC and we always have room if your children need to be in NYC. We have a 6 year old and a two year old and a happy home. I wish we were rich I would help you that way, but with my being ill, it is difficult, but we can offer that. I will keep all of you in my prayers. My home number is 845-832-7493, seriously, if there is anything that I can do, please do not hesitate to ask. God Bless all of you.
Regards,
Dale Beth Gaglio & Family
I just saw your girls on “The Doctors”, and it touched my heart in a special way. My daughter is 22 years old, and her name is Cassie. On June 8th, 2008 , Cassie gave birth to our first grandchild, Addelyn Mae, and we call her Addie or Addie Mae. So we too have a Cassie & Addie! I just wanted to let you know, God still performs miracles!!! Our Cassie & Addie both are examples of God’s miracles. Cassie had what they call a placenta abrution and had to have and emergency C-section. Addie came out no pulse, not breathing, and had to be fully recessitated, and Cassie hemmoraged so bad that she had to have 6 units of blood, 2 bags of plasma. They both were in very critical condition. We were traumatized. Cassie also had the pre-eclampsia after delivery, and Addie started having seizures 16 hours after delivery due to the lack of oxygen. We are born again, faith believing, christians, and alot of people, even ones we didn’t know were praying for us. Addie stayed in the NICU for 13 days, and Cassie came home, had to be readmitted, so she was there for 9 days. Long story short, Addie has not had anymore seizures since that first day that she had them. Cassie came home on 1200mg of blood pressure medication, her vision was affected, she had kidney problems, and just alot of unexpected medical issues. They both came home, and we are now 3 1/2 months down the road, and Cassie is off all meds and vision has corrected and she is back to normal. Addie is a beautiful, normal 3 month old little girl. I believe in miracles from God!! Cassi & Addi and your family will be in our prayers, and I will put you on our church prayer list. We will ask God for a miracle for ya’ll just like we recieved. Your girls are beautiful and blessed to have you for parents. Expect a miracle by BELIEVING!!!!!!
I just watched your family on the DRS. and my heart and prayers for a cure, goes out to you. I have a 5yr. old grandaughter who lives with me and I can’t imagine what you go through in a days time. It is hard with a child with no problems. So I wish you all the love that those two beautiful girls can give you.
I saw your story on the drs and wanted to offer information. my son has cerebal palsy and seizure disorder. There are no medical doctors that can help him. We are taking him to therapy where they are in touch with a scientist who specializes in identifying pathogens and viruses in the brain. This PHD has 16 years research in helping children with autism and other disorders. you can call me at 631-831-8081. Go to the website at http://www.dreamweaverhouse.org. Click on adult treatment modalities and then on therepy patches. You can listen to Dr. Hunt’s 15 min lecture on drug free way to heal brain disorders. Please don’t hesitate to call me. I will be praying for your girls. Shari koska