Here goes …
Our sweet, kind, smart, loving Henry has been diagnosed with a rare degenerative brain disease called Adrenoleukodystrophy. This genetic, degenerative disease affects the white matter (myelin) of the brain. Currently there's no cure. There will most likely be no treatment besides palliative care.
If you want to find out more about this disease please visit: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002165/
We are crushed and heartbroken and feel as though a very dark cloud has descended over our lives. We are just so, so sad.
Our sweet, kind, smart, loving Henry has been diagnosed with a rare degenerative brain disease called Adrenoleukodystrophy. This genetic, degenerative disease affects the white matter (myelin) of the brain. Currently there's no cure. There will most likely be no treatment besides palliative care.
If you want to find out more about this disease please visit: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002165/
We are crushed and heartbroken and feel as though a very dark cloud has descended over our lives. We are just so, so sad.
Right now the boys are our saving grace,
providing us with lots of laughter and smiles and all kinds of mischief and excitement. We know there is still plenty of fun to be had and good times to enjoy even though we're on this journey. We're planning on doing just that.
It is just not fair. I think of you guys every single day and tell as many people as I can about your precious boy and family in hopes that the prayers and positive energy will do some good. Much love to all of you!
ReplyDeleteMuch love to you and yours, Jenn.
ReplyDeleteSo much love to you and your sweet boys, Jenn.
ReplyDeleteThinking of you each and every day. Sending so much love.
ReplyDeleteDanielle said it so well. I think about Henry and your family daily. Lots of love to all of you.
ReplyDeleteSending all my love to you all. <3
ReplyDeleteI wish this weren't happening to you, Jenn. What a sweet, adorable boy Henry is.
ReplyDeleteSending good thoughts, prayers, hugs and love to you all!
ReplyDeleteLots of love and hugs
ReplyDeleteYou are not alone. I think of you and your family every day. You are in my heart and my thoughts. <3
ReplyDeleteWow! I'm soo sorry for this diagnosis. He is a wonderful and sweet boy. My prayers and thoughts are with you on this journey. Hugs to you all.
ReplyDeleteI think about you every single day and wish like crazy that this wasn't happening to your sweet boy and your family. Big hugs to all of you.
ReplyDeleteI am so, so sorry to hear this news. Although we just met Henry and your family recently through baseball, he is such a ray of light and I wanted to post and let you know that the Pederson family is sending prayers and positive energy your way.
ReplyDeleteI can not tell you how sorry I am to hear this about Henry! I remember a remarkable and beautiful little guy that I had the privilege of caring for, so many years ago : ) You have an amazing family and I'm sending tons of love and prayers to you all, but especially to sweet Henry!! He is a strong and incredible young man and adored by so many!! Your love for Henry is powerful and I hope that power will help you through this difficult time! Many blessings to you all!!!
ReplyDeleteJennifer, Where do you begin to wrap your head around this diagnosis? I don't know Henry well but I do know you. God knew what he was doing when He placed Henry as your son. You will be an awesome source of strength, not only to Henry but to Troy and Eli too. Be reminded that you have lots of friends and family to lean on. Take care.
ReplyDeleteSo sorry to hear this news, Jen. May God guide you through this journey and be there every step of the way.
ReplyDeleteI know there is nothing that could be said or done by human hands that would make you feel any better but I pray for You and Troy that God will hold you çlose and guide you through this difficult journey and not let your hearts grow hard and bitter as I ám sure would be the case for me or anyone else who might go or be going through something like this. I am sure you are spoiling and loving him to the nth degree! And you should! God bless you and your family! Love, and hope to you all!
ReplyDeleteLove to you all, Jenn. You are in my prayers each and every day.
ReplyDeleteWe are so very sad for you, and thinking about you and keeping you in our thoughts and prayers.
ReplyDeleteThinking of your family and praying every day for Henry. <3
ReplyDelete