Name: Jacob CommentsJacob, It's great to meet you! Love the name by the way!! I am 3 months old and was just diagnosed last week with SMA type 1. I too am from NC, Greensboro to be exact. My parents sound a lot like yours; they are refusing to believe that I have a time line on my life. Thank you so much for the information about the Stanford trial. I am going to tell my mommy and daddy to call Dr. Wang as soon as they can. We would love to talk to your mom and dad if they wouldn't mind answering some questions, especially since we are so close! Good luck little buddy! You are absolutely adorable! Love, Jacob B Name: Brandy D. Shifflett (Emma's Mommy) CommentsI hope you are feeling better and are home really soon Jacob!!! Happy Thanksgiving sweet boy! Hugs, Brandy Name: Sarah Turnbull CommentsJacob and family, What a cutie pie you are! I've enjoyed reading your journal and viewing the pictures and videos on your website. You are a little miracle and we want to thank you for letting us take a glimpse at your life. Sarah Turnbull Mom to Treyton (SMA-free) and Stella (7 months and SMA TYpe I) Name: Kathy Greeson CommentsI'm good to read and hear about your family and what is being done for Jake. To Jake, I'm one of your grandmothers cousins who now lives in Florida. It's good to be able to keep up with you on your website. My heart, love, and prayers go out to you and your family. Name: Ruth Kreeger CommentsName: Jane Moss CommentsThis is wonderful It was so good to see you yesterday; Jacob is remarkable. I think of your family often, and you're always close to my heart and in my prayers Jane Name: Jeanna and Lizzy CommentsHello Jacob! You are getting so big!! sending lots of hugs your way!! Jeanna and Lizzy www.our-sma-angels.com/elizabeth Name: LEANN CommentsGOD BLESS YOU AND YOUR FAMILY. YOUR ARE A BEAUTIFUL LITTLE BOY. GOD WILL BLESS YOU AND YOUR FAMILY FOR BEING SO LOVING AND NOT GIVING UP. Name: allen carpenter Commentsdear jennifer just tonight my mom jane carpenter told me about yourtouching story.its tugged at my heart to tell you that i will be praying for you as well as my mom will. you know sometimes life isnt fair, but it is always heartwarming to know that people love you and care about you. may god be with you and your family. love allen Name: Janet Burleyson CommentsI'm sorry to hear about this. My prayers are with you. When I pray for my Grandson, I will also say one for Jake and his family, as I know first hand the pain you are going thru too. Our Grandson has PMA. At 8 months old they removed an 8 inch tumor from his spinal cord, They also said he would never crawl, walk, talk, and be paralized. His was the onlt 3rd reported case in the USA. His survival chance is low to, 40% to the age of 5. He has been on chemo EVERY week since he was 8 months old. He just turned 3 in March. There is no cure. If you would like to read more about him and the PMA, he has a web page: www.freewebs.com/kolbydavis. Bless our babies. I've never done so much praying. I've ask God to take me, not him. But you know miracles and alot of prayers go along way. This past Christmas, he started talking, not to clear, but that was one he beat, he started walking in Jan this year, falls alot, he was fitted for braces a couple of weeks ago, he is not brain dead like they said he would be, actually they think he might be border line genius, so, kepp the faith, we have, and look at all the things he's done they said he wouldn't ever do. I also beieve, he will make it pass 5, I fill if God wanted him, he would have already taken him, God works in miracles, and does answer prayers.I called John Hopkins Hosp, who does research on PMA and he told me he's life was to find a cure or a reason for PMA, but never had anthing bigger than dime of tissue to work with, and it wasn't enough to try and find a cure. When I told him about Kolby having an 8 inch cancerous tumor removed, he was ecstatic, ask if I would ask my son and his wife if he could have that tumor for his testing, or course they said yes, and it was sent ot him.I think God done that for a reason. Best wishes and please keep me inform of his success, I put my trust in God,not in man. Bless You and your family and especially Jake. Name: Brittany Rogers CommentsMrs.G, My prayers are with you!! God do not put more on us than we can handle so i know that everything will be alright. just keep praying and a change will come, i promise. you and your family are in my prayers every night. i was just browsing the internet and i came upon this site, it is funny how God works. if there is anything i can do whether it is fund raisers or donations please feel free to email me. i attend the Art Institute of Charlotte so i am not far at all. love, Brittany Name: Linda Raborn CommentsOur thoughts and prayers are with you and your family. Name: Dickie Chapman CommentsJacob is a beautiful little boy. My heart goes out to you. I will keep Jacob in my prayers daily. My God bless all of your family and especially Jacob. God has blessed me with a 2yr and 4yr old grandson and I just live for them. God Bless You, Dickie Name: stacy custer Commentsi read about jacob on the internet he is in my thoughts and prayers Name: stephanie goldberg CommentsI was especially touched by Jake and his story. My son, Ari, is twenty five with SMA Type I. We have seen many miracles throughout his life. He has received many of the Medicaid services in NC. We would be happy to share with you anytime. You have a great website and obviously, have done alot of research. Keep up of the good work! Name: Robin Pennington CommentsGod can cure anything and anybody. My family and I will pray for Jacob and your family everyday. All my love and prays. Name: sharon chappell CommentsBless you all. I know it is tough. I adopted a severely special needs boy and I know it is hard. Keep the faith. Name: Amy CommentsWe are praying that you and your family find the cure that you are looking for. The Wentz family Concord, NC Name: Wendy Bost CommentsI read your story on WSOC-TV.com and it stood out to me as our children have the same peditrian. Dr. Clegg. I love Eastover pediatrics. Also I work for the Dept. of Social Services and Medicaid. In the story it states you are having problems getting Medicaid. I would be happy to speak to you about the program and help in anyway that I can. Please feel free to call me at 704-737-4796 or via my email address. God Bless!! Name: Liz Dutzy CommentsHi Jacob! You are such a handsome, little man, and your family obviously loves you SO much! You remind me a lot of my daughter, Kalair. I loved watching your bathtub videos. Kalair was also a very chubby SMA baby and loved to move in the water. Do you have slings to help you wiggle your legs when you are out of the water? Our princess loved to do that too. Tell your mommy and daddy they did a great job on your website! I wish there had been a video online showing me how to do Kalair's therapies when she was diagnosed. We will be back to check on you and see how very cute you are as you grow up! Hugs, Liz, mom to Kalair (forever 7, SMA1) & Arturo (25 months, SMA2) Name: Andrea Mayer CommentsMy sister n law died of SMA in 92. I understand your pain. I watched her sturggle as a young adult. She was only 35. One of the youngest as an adult. As you know SMA is discovered as an infant or in your later years of your life. It was an experience I will never forget but always treasure close to my heart. May God continue to Bless you and Jacob. Name: Angie CommentsI am sorry to hear about your son. But, I believe GOD can cure anything. We just have to remember it is in God's time not or timing. Name: MJ CommentsJust testing your guestbook, Jacob!
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