Comment: Hi everyone! I am Mindy Cirner's cousin Melissa from Michigan. This website is fantastic, and I will definitely forward it on to all that don't understand this disorder. You are doing a great thing for everyone affected by RCDP. Sincerely, Melissa

Comment: Love the Website! Thank you for sending it, and I will send it even more!

Comment: This is so touching, and glad someone came up with the idea. It is nice to keep up with other families. I still am interested to see how other RCP children are doing. Bobby was a sweet boy. He passeded away 3 years ago Feb 28th. We pray each day for other RCP babies. A big hug to the Iaia family for helping me thru our difficult time. Bless you all. Leigh

Comment: This is AWESOME! I'm so proud of you Mary!!!

Comment: Love the website. They are all precious angels straight from Heaven above. Please contact me if I can help with fundraising or anything. I am willing.

Comment: Mary, You did it!!!! What an awesome website.

Comment: Congratulations on getting the site up and running, it looks good and should be a great resource. Kyla and I are so proud of you and the way you are making the best out of this situation. I love you lots sister and give that little booger a big kiss for us.

Comment: Mary... I am so impressed. You are much more technologically advanced than I thought! Great job!

Comment: Mary I know you do not know us but we read Ians website every day. We are the Kemps.. Rick Renee Misty and Tiki.. that went to church with your family years ago in Gadsden at 12th Street Baptist. Our church keeps up with Ian and we pray for him in every week. I am sure you do not remember us but we remember that beautiful Mary and you havent changed. You are a wonderful beautiful Christian Mom. For someone that is not computer savvy you did a great job with this website.

Comment: Mary, you have done an awesome job creating this site. I have already added the new children & their families to my prayer list. May Our Lord continue to bless you and yours, Luv U, Mrs. Carolyn

Comment: Hi, I am Mary Ellis' aunt. This is an awesome web site. The love put in it is evident! The love of the parents even more so! Praying that God will use this in a mighty way to help those with RCDP and touch the lives of others to help. Love, Aunt Donna

Comment: Mary, you have done such a fantastic job with this site! I read and looked at everything and was very touched. God bless you and your family and all of the other families that I read about on your website.

Comment: Hi everyone! I am a friend of Melissa and Kathy Maher. Just wanted to say what a great website, very informative.Thanks for the pictures, your children are beautiful.Sincerely, Renee

Comment: Mary-you did an amazing job on the site. I am so proud of you and so glad to call you my friend...Ian is so very lucky to have such an awesome mom!

Comment: I am amazed by your website....GOOD JOB! I know that many people will be so thankful.

Comment: Hey Mary, Glad to see the new website up and running. It's great. GOD bless you

Comment: Hi Mary, Just a note to tell you what a fabulous job we think you are doing with the website. Only a week old and you have already changed and updated the site. As a new computer person myself I am very impressed with what you have done. We love checking on all our "kids" everyday. Best wishes from the Michigan people, Kathie, Melissa, and Mikayla.

Comment: Mary the website looks GREAT! I know it will help so many people! Can't wait to see more. With Love, Morgan Green Birmingham, AL

Comment: Mary, i am soooo proud of you. God has given you a gift and a ministry with Ian. How many parents can say that their child was in the ministy at 3 months of age. Ian has touched more people for Christ in his short life than most do in a lifetime. Thank you for following Gods lead, and giving a voice to RCDP and the families that are affected. I am so thankful for having the priviledge of being apart of your journey. Love you guys. kristi

Comment: I am Jake and Jordyn Cirner's grandmother. I am blessed to live with them and see them everyday. This web site is a great thing. I remember when Jake was diagnosed and we had no where to turn. Your website will help many people understand RCDP. I know GOD watches over all these special children. Jake & Jordyn's "Gran"

Comment: THANK YOU FOR GETTING THIS WEBSITE UP AND RUNNING. I MUST ADMIT THESE ARE SOME BEAUTIFUL CHILDREN. GOD'S MOST PRECIOUS ANGELS, FOR SURE. GOD DOES NOT MAKE MISTAKES, HE LOVES ALL OF HIS CHILDREN, AND SO DO WE. MY GRANDSON IS ETHAN HOLLADAY. WE LOVE HIM DEARLY!!

Comment: This is a great website with information that will help many families. Before last year I did not know anything about this medical condidtion. May God bless each of these children and continue to strengthen and encourage each family member. While deployed here in Afghanistan, our Bible Study Group has prayed for Ion, Jackson, and Ethan. We will lift up all these children in prayer.

Comment: The website is great! It is inspiring to see how the families have bonded together. Keep up the good work.

Comment: I think it's wonderful all the effort y'all have put in to bringing awareness and hope to this disorder. It's very easy to be upset and ask why, but it is the essence of hope when those suffering can do good. Count your blessings and best wishes! Jess

Comment: Mary, Thanking God for you and the other families. This site is amazing. You have done such a great job. Keep the faith, His plan awaits..... Miss Tammy

Comment: We love you Jordyn and we all wish the best for you and your brother and of course your whole family. Glad Jordyn is doing better and keep the prayers going.

Comment: Hi everyone, I'm the Cirner's caregiver and family friend. I just wanted to say I think the website is great! It's very informative and the pictures are adorable. I hope all your little angels are doing well. Sincerely, Alesha

Comment: Mary, The website looks great! I know it will bless many people. Sandie Rainey (Mary's substitute teacher and friend)

Comment: What a wonderful tool to learn about RCDP. I am very excited that Mary has started the website and I know that God is going to continue to use her in a mighty way to help others understand this disorder and also for the families to stay connected...how wonderful!!! I LOVE YOU Ian and may God bless all these little angels today!

Comment: The website looks great! It is so great to see how God is working in your lives! I check Ian's page daily and my husband is now checking it with me too! I was one of Ian's nurses at delivery and come to find out what a small world we live in, my husband, Nate and I are good friends with Blake and Jill Arthur. We actually don't live too far from each other either(we live in Munford)Please know you remain in our prayers as do the other families you have reached out to! Love is sent to your family and your sweet angel Ian!

Comment: Hello Eline, I am your one of your parents American friends. It has been a few years since I last saw you. Your mother keeps me up to date with your pictures and knowledge of the love so many have for you. Your are in our prayers. In christ, Mark Bloem

Comment: Great job on the site, Mary! God is so in control and he blessed each RCDP baby with the best parents for them. They've already touched so many lives in such a short time. Please let me know if I can help you with fund raising. Again, great job!

Comment: I just wanted to say how much i love the page. Im a mother of 2 affected with RCDP, and i cant tell you how much it means to be able to get in touch with other families. Love and best wishes to all! Ashley

Comment: I am so happy to see the web site for RCPD. We had a daughter, Kara Joy, born 8/15/96 with RCPD. Like so many others, we did not know what to do, but give her love. That's what God wants us to do -- love the unlovely. Our Kara Joy passed away 9 weeks later 10/21/96, but the lessons we learned have stayed with us. Because my husband is a Baptist pastor, he has used her life to help so many others. Our God is good and never makes a mistake! He has blessed us with 4 healthy boys and we are thankful. Keep up the good work of encouraging others with a child with RCPD.

Comment: Hi there! I am Jake and Jordyn Cirner's Aunt and I just wanted to let you know that I think this website is fantastic! My thoughts and prayers go out to all the RCDP children & their families.

Comment: I love the website. Mary, I am so glad that you have been able to help so many people with your research. You have a beautiful little boy and I know you are SO PROUD of him. I check daily on Ian, Ethan and Jackson and have been amazed at how far they have come. Keep up the good work and always keep your faith. May God Bless you all.

Comment: I AM ONE OF THE NURSE'S AT ABBY AND JACOB CARSON'S PEDS OFFICE. ALL I CAN SAY IS THAT THESE TWO KIDS ARE SO LUCKY TO HAVE THE LOVING MOST CAREING MOTHER TWO KIDS COULD EVER HAVE. WHEN ABBY AND JACOB COME IN TO OUR OFFICE THEY LIGHT UP ALL OF OUR FACES.I WILL PRAY FOR ALL OF THESE FAMILY'S. I CAN TRUTHFULY SAYS I AM PROUD TO SAY THAT I AM PART OF THESE KIDS LIFE.

Comment: Mary, The website is great! We would like to purchase t-shirts at the Early Learning Center so we can support one of our future students.

Comment: I had a son with RCDP. Richie was born 6/27/89 and went to be with Jesus on 8/3/93. I feel very blessed to have been his mom and be able to love him. He is my angel and I miss him very much. I want to pass on to you all what my mom said to me the day my son was born. She told me that God knows who to give these little angels to and only picks the most special families. My heart goes out to each of you. I really enjoyed the website and pictures. I see my little boy in all the pictures.

Comment: May God bless each family mentioned on this site. I am a family friend of the Holladay's. and we are so proud of what God has done for Ethan, and I pray you all have the strength we've seen in Herb & Melinda! God Bless You, and Keep The Faith

Comment: the t~shirt selling is going great.we have sold at least 150.

Comment: Hey Mrs.Mary. Ian is so adorable. I love you & Ian. I hope he gets to feeling better.

Comment: Hi,my name is Cheryl,I am the proud parent of a son who is now 13 years old who doctors cannot beleive. He was born with RCP on sept.23,1994. we dont have an email but our phone number is 803-796-9923 in sc.Iwould like to be added to your website. Thankyou

Comment: Please visit our website for our info on perixisiomal disorders.

Comment: Dear Mary, I do not know you, I am a nurse just getting ready to take my boards and thought it might be nice if you knew, there are questions on boards for this condition and other simlar conditions, I wanted to do more reading and found your web site. What a great bonus I received for wanting to know more about this condition, while I will not be working with babies, I will be working with the eldering, I was thrilled to find your web site, and O the babies are so adorable, you just fall in love with all of them as soon as you see their photos, I hope to someday do more with this condition. May God bless you and take care of you and your baby, I am not sure which one was yours but they were all beautiful. My heart and soul has been lifted today because of your web site. I will keep coming back to your web site to keep myself up dated and hope only the best for you and yours love your friend margie blaine

Comment: What a wonderful website. All of you are in my thoughts and prayers.

Comment: hello,i am abbie and jacob cousin tiffany this website helps alot thankyou.

Comment: The Benefit was a great time! I think you did a great thing for these kids! I hope you raised a lot of money!!!!

Comment: This web site is incredible and an answer to our prayers. Our son Noah is 13 and has RCDP 1. When he was diagnosed there was very little info on this condition. A few years after he was born we found the support group over the internet but our attempts to contact them never worked. Don't know why. Because of this we only periodically check for RCDP news. Recently Noah has been experiencing increased pain and we are having difficulty treating it. We would love to hear from other parents.

Comment: This website is so inspiring. I look forward to the reading the daily journals.

Comment: just today received the news that my 10 month old beautiful daughter has RCDP. Currently testing for severity. Very very upset at the moment and received the news by letter from our genetecist with no explanation of what the disease is. great website definitely found out a lot from it, some of which i didnt want to know, obviously.

Comment: I cant imagine the agony of basically waiting for your kid to die.I myself am only 12 and of course,have never had a child.But i can only imagine what it would feel like to see your child everyday suffering.I myself have migraines,my mother and I sometime this week,our going to a neuroligist.I can only hope its nothing,i know its probably nothing compared to what thes children have to go threw everyday.But still,I saw this article about rhizo kids and it literally brought me to tears,not only that but it gave me somewhat of a glimpse of what my mother feels like everyday when i usually have my migraines.To be a parent and to be powerless to your own kids...its unfathomable.But then i saw the little print at the edge of the page about this sight!To see things like this,gives me hope;to me and perhaps these helpless little kids with this uncurable disease.

Comment: Jeff and Mindy - This is a very good sight to have. So inspiring to have a central location for folks to share. It was fun to see you at the picnic last month being such a great dad and mom for Jake and Jordyn. Watching them smile and giggle when you hold them is priceless. You are all in my prayers daily for strength and encouragement. God Bless.

Comment: So glad to see the site

Comment: Hello Mary, I am Amber Blair from Sylacauga, AL. My son Aiden was beside Ian in the NICU at St. Vincent's back in October. I talked with you and your family several times while we were waiting to go in to see the children. My family and I have been praying for you guys since we left the hospital. You are doing a wonderful thing and I would like to help in any way that I can. Please keep me in mind if you need anything. Best wishes, Amber, Andy, & Aiden Blair

Comment: Mary you are amazing. I don't know how you have to the time to get done what you do. Ian is very lucky to have a mommy like you. I know he feels every bit of love you put into finding a cure. I know one day you will!

Comment: Dear sweet Abbigale, and our dearly missed Jake. You are two wonderful children with the most special smiles. We your family want you to know that you have a very special mother and We think that we have been truly blessed by seeing the love and care that your mother gives you both.Your greatgrandmother has always been there when your mom needed you and so would your Grandmother < my sister is there in heaven with Little Jake he's God,s angel now , Marsha I just wanted to say your an incredible mother and I am proud of you never forget that you and I both have a wonderful teacher. I Love You ,Aunt Wendy

Comment: Hi out there! cannot tell you how happy I am.About 8 years i thought we are alone, and now there are you!Lisa is about 8 years old and still looks as a newborn, just drinking her bottle with milk, nothing else. I think about to ask the docs to give her a PEG, has anyone of you done this? I am really scared to do something wrong, but i am sure she needs more calories....dont know what to do...can you help me? Thanks so much!!!!

Comment: my name is Betty and i have a granddaughter her name is KAYLEEshe has RCDP she was born in april 2008 she has been in and out of the hospital with her lungs my son is only 20 years old and his girlfriend is 19 years old and this is my first grandbaby i just want to take this all from KAYLEE

Comment: I spent last two hours looking at this website and Ian's page. I had never heard of this condition, so I was using my Tabor's Med Dict, Lipponcott Drug Book, and internet to find out more about plasmalogens. I was wondering if Ian had surgery to correct the septal defect in his heart? Needless to say, my mind was active while reading this site. It is obvious you guys are awesome parents! BTW, you don't know me. I was referred to this site by Cindy Willingham, who is Morgan's (Freeman?) Mom.

Comment: my daughter kaylee conklin passed away on november15,2008 she is aslo an rhizobaby

Comment: What an informative website. I was unfamiliar with RCDP prior to comig here. Thank you to Mindy for spreading the word.

Comment: Hi my name is tricia kimbro. I have a little girl Patty she has rcdp type2. She is 11 years old and doing very good..Its nice to see someone put a website up about these special angels..

Comment: Hi from Iowa I am so excited to find your webdsite. I do have a rhizomelic child his name is Alex he will soon be 11. He weighs 42 lbs and is3' 9". This is the largest we know is there out there like us? Thank you!!!!!!!!!!!!

Comment: We've never before ran into a website that had other families with Rhizo children!!! Our boy Alex is a Rhizo child as well! Alex is soon to be 11 and doing great. I'd love to hear from you and would also love to get involved with other families like ours!

Comment: I met a remarkable woman (I wish I had gotten her name) and her son Noah in St Louis at the Shakespeare Festival in Forest Park. The entire family seemed delightful and I was so appreciative that she eagerly shared Noah's story with me. She told me about this website and I came straight to my computer when I got home to learn more. I wish I could do more, however, I will be sending a small check in the near future in honor of Noah and his family. Thank you to Noah's mom and to everyone who has contributed to this website for sharing your stories. Sincerely, Kathy Acre

Comment: MY SON WAS RECENTLY DIAGNOSED WITH RCDP JUST ON 6/10/2009 HE WAS BORN ON 4/27/2009 COULD YOU CONTACT ME FOR MORE HELPFUL INFORMATION. www.michelledmann27@yahoo.com

Comment: I recently spoke with Mindy Cirner on the phone. I am a professional fundraiser and was doing that for a major hospital in her area. Just speaking with her made me curious about RCDP. She gave me this website so I had to check it out. Mindy if you see this please feel free to contact me. Sincerly, Jeanette

Comment: Thank you so much for providing all this information. I wish all of you the best of luck.

Comment: Hello to all the RCP families. I think my daugher Georgia Ann Brown is the oldest living RDP person in the USA. She is now 21 and graduated from Special Ed on June 12. She attended the public school from age 3 to 21. Now she gets to hang out at home or with her care givers. She is healthy and small ( 26#). We attended the ADL meeting in DeKalb Ill and it was AWESOME - hope to go another year. Much love to Mary and Wae Ellis and little Ian as he struggles. LOVE Becky

Comment: Hi jeff and mindy. Sam and just wanted to wish you all the best. When you comeback to boston let us know and we will come visit or maybe you can all come over for dinner.

Comment: I have two children with RCDP. Megan is almost 8 years old and weighs about 12lbs. Easton is 4 and weighs about 18lbs. I have not talked to anyone else in all of these years who have had any experience of their own with one of these very special children. I would love to be able to talk to others about their lives with their children. My children have had relatively few problems and I do feel lucky but they do provide their challenges. Thankyou for anyone willing to reach out.

Comment: Hi, my son Corey has RCDP1 and is 13 months old and is doing well. For over a year I did not know there was a support site untill DR. Tiller linked my up with DR. Breverman and I am so thankful. Keep up the good work.

Comment: Hello! My incredible cousin Grant was born with RCDP on October 30, 1986. We celebrated his 23rd birthday this year. Sadly, he passed away this past Saturday on December 5, 2009. I am honored to be his cousin. His parents are two of the most remarkable people I know. I had no idea sites such as these existed. I wanted to share Grant's story with you all. Does anyone know of any Rhizo kids who have survived longer than 23 years? God bless all of you. We're some Cajuns from Louisiana:)

Comment: Hi everyone. I have a 13 month old boy with RCDP1. For over a year I didnt know there was a way to talk to other parents of children with RCDP. Thank you for this site. I would love to speak to other parents.

Comment: I just lost my brother with Rhizo. He lived to be 23 years old and had type one. If anyone ever has any questions just email me. I just found the site because I never looked on the web because my caring cuz found the site

Comment: Hello! I was a special child´s mother only for twelve hours. She was born in 24.8.1985 and she died in the same day. She had really difficult form of RCP (rhizomelic chondrodystrophia punctata). It is nice to read other stories! I like this website a lot. Best wishes, Tarja

Comment: What a great party last Friday! We had a good time and enjoyed most of all meeting Jake and Jordyn. We look forward to helping out with your next Rhizo event. Fondly, JOhn and Debbie

Comment: Every time I visit this site, my son says, "Look that's sissy's (Natalie)" He recognizes the RhizoKids logo and remembers how important this is to us. Thank you to all the RCDP parents.