tag:blogger.com,1999:blog-2078628465077598492.post6204821325303693383..comments2022-12-25T21:52:24.091-08:00Comments on Ryder's Journey: "I am so sorry to tell you this news." Dr. AmatoRyder's family and friendshttp://www.blogger.com/profile/05000339233891608163noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-2078628465077598492.post-61983991101998895192012-08-17T12:02:50.432-07:002012-08-17T12:02:50.432-07:00Hello. I am Jenny. I am the office scheduler at ...Hello. I am Jenny. I am the office scheduler at Baio. Stefanie M has kept us informed on Ryder. My heart aches for you. I am sad with you! I have kept you in my prayers and will continue to do so. I send you and your family love and even more prayers & blessings. ISAIAH 41:13--Fear not, for I the Lord, your God will hold your right hand and say unto you "I will help you."Jenny Baiohttps://www.blogger.com/profile/01494293786825579996noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-33864030900351169712012-08-16T07:20:43.517-07:002012-08-16T07:20:43.517-07:00So sorry to hear about your little Ryder but as my...So sorry to hear about your little Ryder but as my 5yr old stated when a close friend passed away ” yay! He's with Jesus now” it really put things in perspective for me. Have you ever looked into medical marijuana treats for him? I have a friend who has a little boy with a rare disease, they said he would not live past 5. He had a lot of the same symptoms as your son. She was desperate for something to at least make him comfortable and aware at the same time. Tears of joy stream down our face as after 1 week of a brownie every other day, has helped him dramatically. He gained 9lbs, made.eye contact with him mother for the first time, and even hummed a tune, which he had never done. He is happy. I thought I would share that story as I believe it could help Ryder enjoy the last of his time on earth, before rejoicing with Jesus. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-71486763254255232182012-08-15T17:55:44.423-07:002012-08-15T17:55:44.423-07:00our family is going through a child with cancer. o...our family is going through a child with cancer. our familys hearts go out to you and yours. GOD BLESS YOU ALL.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-12277546661587208342012-08-14T10:29:50.222-07:002012-08-14T10:29:50.222-07:00Oh Denise, my heart breaks for you and your family...Oh Denise, my heart breaks for you and your family. Although we didn't know each other well, I felt blessed to have met you and gotten to know your story. Please know your family is in my thoughts and prayers.<br /><br />Hugs to you all! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-47668474930358520542012-08-12T10:41:23.935-07:002012-08-12T10:41:23.935-07:00Our hearts ache for your pain and yet we know that...Our hearts ache for your pain and yet we know that you are paving the way for those of us behind you in the journey. For that fact, we are grateful, because you are handling this with grace and courage that we can only hope to have a fraction of when our time comes for this part of our little one's life. Know that we are with you in our hearts, and prayers. We pray for peace and comfort for your hearts and Ryder. We are miles apart, but close to you in our hearts. Blessings to you and yours, Bonnie (Stephen's Nana)Truth Ferrethttps://www.blogger.com/profile/10472512360373689979noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-1754912423511786712012-08-12T10:22:33.696-07:002012-08-12T10:22:33.696-07:00To all of Ryder's family and loved ones, This ...To all of Ryder's family and loved ones, This is a moment when the cycle of life is distorted and incomprehensible. Ryder is a positive force of life who reaches out and embraces all those around him even now. I am praying compassionately for him. As the hours and minutes pass, may the Lord be gentle with each of you and bring you harmony.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-47892819733399565382012-08-11T20:03:18.572-07:002012-08-11T20:03:18.572-07:00All that I am with Ren, and all we can do, please ...All that I am with Ren, and all we can do, please let us know. Our visit with Ryder today convinced me that you are a special family called by God to be Ryder's parents and brothers. Why these things happen is a mystery, but we promise to do all that we can to help make this easier. I will stay in touch, leaving Wednesday, and Ren will be available while I am away. May God be with you hourly.Karen Everett Kruegernoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-52586077983020130102012-08-11T16:03:11.264-07:002012-08-11T16:03:11.264-07:00Isaiah 41:10 fear not, for I am with you; be not...Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-53760781679154999892012-08-11T16:02:35.013-07:002012-08-11T16:02:35.013-07:00What can a simple person say... I have not had you...What can a simple person say... I have not had your journey or heart-ache. I am filled with tears and sorrow that you and your family must bare this sad time of life. From one mother to another I am SO SORRY! I pray for you to be given Jesus' strength, I pray that you be given God's peace. I pray that Ryder's journey be blessed and that your family is continually blessed. <br />Blessings to you and yours.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-49471818635016135462012-08-11T15:34:48.844-07:002012-08-11T15:34:48.844-07:00Hi Denise, this post was forwarded to me by Shari ...Hi Denise, this post was forwarded to me by Shari Arner as she thought I could help. My heart is breaking for you and I would be more than willing to help with pictures. I am a local newborn and child photographer and member of the National Association of Professional Child Photographers. Shoot me an email and we can work out details. jacquilyn@jacquilynavery.com <br /><br />Your family will be in our prayers, peace be with you.Jax @ AlyandAshhttps://www.blogger.com/profile/12832324602444458554noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-17814737547122506902012-08-11T12:37:04.946-07:002012-08-11T12:37:04.946-07:00My Heart goes out to all of you , Wish I had words...My Heart goes out to all of you , Wish I had words of wisdom , but I don't , but know there are so many people that are thinking of you , I will keep you and your little one in My Prayers ....God Bless !Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-83542134784089161762012-08-11T10:15:01.084-07:002012-08-11T10:15:01.084-07:00It breaks my heart to hear when someone loses a pe...It breaks my heart to hear when someone loses a pet. I just can not imagine the sorrow that losing a very young child could bring. By the time I finished reading your blog, the tears were streaming down my face. I pray that you will have the strength you need to deal with this situation. I hope that I have not used any improper words that might upset you. My only thought was to let you know that in New Britain, PA, there is a person who feels your pain.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-10996546069260335912012-08-11T08:53:43.489-07:002012-08-11T08:53:43.489-07:00Denise, My heart breaks with you and your family a...Denise, My heart breaks with you and your family at this news. What a horrible & harsh disease Alpers is. I have talked with Jenni Rogers at Ryan House about Gummy's end of life and discussing it with the kids. She is really wonderful and gave me some great feedback. She even offered to come to the house to help talk to the children about it. I liked discussing this issue with Jenni better than the hospice Social worker. My advice is that you need to grieve the loss of the dreams for the future not being anything close to what you expected or hoped for. But it is also important not to grieve for the living. My husband had to remind me of that when Gummy was diagnosed with MLD and it has helped me a lot. <br /> I remind myself that not only is my son not promised tomorrow but none of us are so that helps me keep perspective. Just make the best of everday it's all we can do for them and ourselves. I know they say with Alpers Disease that the seiuzures are difficult to control But I will still pray that they will find a way to control Ry's. Our Prayers are with your family♥Gr8Lifehttps://www.blogger.com/profile/09744116137088882820noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-92191021198053420542012-08-11T08:40:58.352-07:002012-08-11T08:40:58.352-07:00No mother should have to write what you just did. ...No mother should have to write what you just did. I am so sorry for you and your family, and for sweet Ryder. Your strength and outlook is greatly admired and and inspiration to us all. God bless.Lori F.noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-32498656998394081932012-08-11T08:39:11.494-07:002012-08-11T08:39:11.494-07:00I am so sorry to hear of this sad news. My heart g...I am so sorry to hear of this sad news. My heart goes out to you and your family. I heard about Ryder through a friend on Facebook. There is a group of photographers that offer free family photos to the families of children with life threatening illnesses and I think they could help you out. It's called The Tiny Sparrow Foundation. <br /><br />I will keep you and your family in my thoughts and prayers as you navigate this difficult road ahead. <br /><br />tinysparrowfoundation.orgSnyder Familyhttps://www.blogger.com/profile/14434808297488449055noreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-17882496392083097302012-08-11T06:49:51.032-07:002012-08-11T06:49:51.032-07:00He may suprise you and live longer than they think...He may suprise you and live longer than they think. Anaya had all those symptoms for a year and a half before she died. I know it's a different condition... But the key here is DON'T PANIC. <br />Don't think too hard about the future, don't gaze into the past and think about what is lost... Just stay in the present with Ryder and do things together that he enjoys. Anaya was blind but she loved when I sang to her. She loved listening to cartoons too... And her favorite was bath time!Camaranoreply@blogger.comtag:blogger.com,1999:blog-2078628465077598492.post-50425778231864730442012-08-11T06:00:51.400-07:002012-08-11T06:00:51.400-07:00Denise, I am so sorry you have gotten such terribl...Denise, I am so sorry you have gotten such terrible news. I don't quite know what to say other than I hope you, Ryder and your whole family can get some rest and find peace.ameliahttps://www.blogger.com/profile/17793708003451553174noreply@blogger.com