Im so sorry for your loss. My son Dylan has Late Infantile. I know the pain you were going through when Bryce was fighting this disease but i have yet to feel the pain you and your family are feeling now that Bryce is gone. You and your family are in my prayers. Bryce's story touched my heart and soul. God Bless!!
@sweetDylansmommy I am so sorry you also have to deal with this awful disease. Stay strong, be true to yourself and never give up hope. It is a long journey but it gives us so much out of life too- we are better people for knowing our children. My thoughts are with you xxx
my heart feels your pain.my gracious jack was diagnosed with late-infantile 2 months ago.your story is mine.none of us know strength,courage and will until you meet a child with battens!!!my jack teaches me daily and will for all time.our children give meaning and have a purpose to change this world!!!!xo
@MrJacksmummy you are right- I am sorry your son has also been diagnosed. Our children teach us many lessons. I know in my heart that Bryce taught us more than what we taught him. We miss him so much, words cannot describe. And whilst his journey has come to an end- ours continues. We will never give up the battle into this disease and will continue to support affected families in whatever way we can. God bless you and your son xxx
@Brycesmummy thank you.i wish nothing but the best to you and your family.hope to talk and meet we are also from aus.this is also my path to raise awareness and do whatever it takes to help in the fight!!!xxoo
@Brycesmummy thank you!what a beautiful boy!!!no words can be enough so we fight for our children we are never defeated this is my life work for bryce,jack and all the children sooooo special!!!!i hope to meet and talk we are also from aus.take carexxoo
I'm Jonathon Browns mom, he has Juvenile Battens and still fighting.
I'm so sorry Bryce is gone, I know how much it hurts. For me, it feels I've been grieving since the day we were told, and I don't know when it will ever end. But I wouldn't change a single heartache, he is worth every little pain I feel. I am grateful for each day, and each day we press on, accepting each change and downfall.
I am so very sorry for your loss. I can never make it through the clip with dry eyes as Bryce resembles my son so very much. He is such a beautiful boy. Rest in Peace and free of pain, little man. You will be in my thoughts even though I never met you. xxx
Im so sorry your little boy lost his battle against this terrible disease. I glad he got to celebrate his tenth birthday - what a special milestone. My deepest condolences to you and all your family and friends. What a remarkable tribute to him. I have always started to watch it after clicking on the link from EB but never been able to watch it all the way through - I did tonight and realise what an absolutely gorgeous little boy Bryce was. Im so very sorry for your loss.
Our brave boy Bryce lost his battle on Sunday May 29th 2011 warm in his own bed, aged 10 years, 2 weeks and 2 days old. Our Little Man has been set free out of his body and is now rid of this disease and free from pain. RIP Brycey- you were loved by so many and touched so many hearts in your short time on Earth. You will be missed more than anything. Loving you~ always & forever xxx
@Brycesmummy I know it might not mean much, but I could tell Bryce was a fighter. You mentioned he wasn't expected to live past his tenth birthday, but there he goes roughing it another 16 days. 16 days might not be a lot to some people, but when you're living on borrowed time, it means the world to some people. May god bless you and your family through this hard time. xxx
RIP Bryce. Thinking of you all during this devastating time. You were so brave to share your story with the world and bring our attention to this disease. He was a beautiful boy, fly free Bryce xxx
I am very sorry to hear that Bryce has passed away. What a special little boy he was. You and your family are in my thoughts, and I'll be sure to light a candle for him.
What a beautiful boy. I'm sorry you didn't get to watch him have a long and healthy life. No words can express how sorry I am for your family. Please know you are in my thoughts and prayers. I am from EB and have read your posts over time, and know that he was blessed with a family that loved him unconditionally and cherished every moment they had with him.
I am deeply saddened to hear of the passing of your beautiful boy Bryce. I have followed your story on EB and just wanted to say to you and your family that your are in the thoughts of many people. Bryce was a brave boy til the end. Fly free with the angels now Bryce.
God bless your son......my heart broke for him (and for you). He looks like a little angel. There has to be a reason for this, one we just don't yet understand. It will all make sense one day. But that doesn't mean it doesn't suck :( I am so sorry.....keep holding on little angel boy! You'll be okay!
My thoughts are with you. I am sorry I missed the 7pm Project. I was out of the country and didn't realise until after it had aired. My son had Batten's disease. They are certainly very special children to say the very least. Stay strong - I admire the work you have done to get the word out. Amanda x
I know of your sisters. I have spoken to your dad before. Actually, your dad was the first person I spoke to after learning of Bryce's diagnosis some 5 years ago. I hope you are well. Thank you for your comment. Give my love to your parents and tell them to contact me anytime. They can get my contact details through Vanessa Anderson. x
Both my Sisters had juvenile battens disease, Tegan & Siobhan Sowry of NSW Australia. My big sister and little sister. I am so sorry to hear of your story. All I can say is to have faith, and love your son as any parent should. All my love.
I really don't know what to say. Your son is gorgeous and I am so sorry that you, Bryce and your family have to deal with this heartbreaking situation.
I cried watching this. I have two young children of my own and couldnt begin to imagine watching them deteriote like that. So sorry for your loss.
AbneyParkFan 2 months ago
This had me crying. I'm so sorry.
BettyCallMeAl 4 months ago
Im so sorry for your loss. My son Dylan has Late Infantile. I know the pain you were going through when Bryce was fighting this disease but i have yet to feel the pain you and your family are feeling now that Bryce is gone. You and your family are in my prayers. Bryce's story touched my heart and soul. God Bless!!
sweetDylansmommy 7 months ago
@sweetDylansmommy I am so sorry you also have to deal with this awful disease. Stay strong, be true to yourself and never give up hope. It is a long journey but it gives us so much out of life too- we are better people for knowing our children. My thoughts are with you xxx
Brycesmummy 7 months ago
my heart feels your pain.my gracious jack was diagnosed with late-infantile 2 months ago.your story is mine.none of us know strength,courage and will until you meet a child with battens!!!my jack teaches me daily and will for all time.our children give meaning and have a purpose to change this world!!!!xo
MrJacksmummy 7 months ago
@MrJacksmummy you are right- I am sorry your son has also been diagnosed. Our children teach us many lessons. I know in my heart that Bryce taught us more than what we taught him. We miss him so much, words cannot describe. And whilst his journey has come to an end- ours continues. We will never give up the battle into this disease and will continue to support affected families in whatever way we can. God bless you and your son xxx
Brycesmummy 7 months ago
@Brycesmummy thank you.i wish nothing but the best to you and your family.hope to talk and meet we are also from aus.this is also my path to raise awareness and do whatever it takes to help in the fight!!!xxoo
MrJacksmummy 7 months ago
@Brycesmummy thank you!what a beautiful boy!!!no words can be enough so we fight for our children we are never defeated this is my life work for bryce,jack and all the children sooooo special!!!!i hope to meet and talk we are also from aus.take carexxoo
MrJacksmummy 7 months ago
I'm Jonathon Browns mom, he has Juvenile Battens and still fighting.
I'm so sorry Bryce is gone, I know how much it hurts. For me, it feels I've been grieving since the day we were told, and I don't know when it will ever end. But I wouldn't change a single heartache, he is worth every little pain I feel. I am grateful for each day, and each day we press on, accepting each change and downfall.
Hugs~
lestyboss 8 months ago
Im so sorry for your family. Two of my cousins have battens disease as well and Its just tearing us apart. Our heart goes out to you.
trippyriders 8 months ago
I am so very sorry for your loss. I can never make it through the clip with dry eyes as Bryce resembles my son so very much. He is such a beautiful boy. Rest in Peace and free of pain, little man. You will be in my thoughts even though I never met you. xxx
Tristessaable 9 months ago
I am so sorry for the loss of your beautiful little boy
angel1977b 9 months ago
iam so very very sorry for the loss of bryce. my heart aches for you. His a gorgeous boy. xxxxxx
misswickednikki 9 months ago
Im so sorry your little boy lost his battle against this terrible disease. I glad he got to celebrate his tenth birthday - what a special milestone. My deepest condolences to you and all your family and friends. What a remarkable tribute to him. I have always started to watch it after clicking on the link from EB but never been able to watch it all the way through - I did tonight and realise what an absolutely gorgeous little boy Bryce was. Im so very sorry for your loss.
cathyheff 9 months ago
Our brave boy Bryce lost his battle on Sunday May 29th 2011 warm in his own bed, aged 10 years, 2 weeks and 2 days old. Our Little Man has been set free out of his body and is now rid of this disease and free from pain. RIP Brycey- you were loved by so many and touched so many hearts in your short time on Earth. You will be missed more than anything. Loving you~ always & forever xxx
Brycesmummy 9 months ago
@Brycesmummy I know it might not mean much, but I could tell Bryce was a fighter. You mentioned he wasn't expected to live past his tenth birthday, but there he goes roughing it another 16 days. 16 days might not be a lot to some people, but when you're living on borrowed time, it means the world to some people. May god bless you and your family through this hard time. xxx
newlybrokenroad 9 months ago
What a courageous lil man, now flying high with the angels and finally pain free, R.I.P xx
ThePoleMinx 9 months ago
RIP Bryce. Thinking of you all during this devastating time. You were so brave to share your story with the world and bring our attention to this disease. He was a beautiful boy, fly free Bryce xxx
tigbat 9 months ago
I am very sorry to hear that Bryce has passed away. What a special little boy he was. You and your family are in my thoughts, and I'll be sure to light a candle for him.
mylene97531 9 months ago
What a beautiful boy. I'm sorry you didn't get to watch him have a long and healthy life. No words can express how sorry I am for your family. Please know you are in my thoughts and prayers. I am from EB and have read your posts over time, and know that he was blessed with a family that loved him unconditionally and cherished every moment they had with him.
cannondale842 9 months ago
I am glad he made it to his 10th birthday and you got to spend Mother's Day with him. A very special memory for all of you.
MrHaydopotato 9 months ago
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MrHaydopotato 9 months ago
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MrHaydopotato 9 months ago
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MrHaydopotato 9 months ago
I am deeply saddened to hear of the passing of your beautiful boy Bryce. I have followed your story on EB and just wanted to say to you and your family that your are in the thoughts of many people. Bryce was a brave boy til the end. Fly free with the angels now Bryce.
MrHaydopotato 9 months ago
What a beautiful little boy and such a heartbreaking story... I will keep you all in my prayers!!!
Mommy2Kalila 9 months ago
He is such a beautiful child. I pray for you all.
Gwendlite 10 months ago
God bless your son......my heart broke for him (and for you). He looks like a little angel. There has to be a reason for this, one we just don't yet understand. It will all make sense one day. But that doesn't mean it doesn't suck :( I am so sorry.....keep holding on little angel boy! You'll be okay!
LeannaElise 1 year ago
My thoughts are with you. I am sorry I missed the 7pm Project. I was out of the country and didn't realise until after it had aired. My son had Batten's disease. They are certainly very special children to say the very least. Stay strong - I admire the work you have done to get the word out. Amanda x
chicama18 1 year ago
Hi Ben
I know of your sisters. I have spoken to your dad before. Actually, your dad was the first person I spoke to after learning of Bryce's diagnosis some 5 years ago. I hope you are well. Thank you for your comment. Give my love to your parents and tell them to contact me anytime. They can get my contact details through Vanessa Anderson. x
Brycesmummy 1 year ago
Both my Sisters had juvenile battens disease, Tegan & Siobhan Sowry of NSW Australia. My big sister and little sister. I am so sorry to hear of your story. All I can say is to have faith, and love your son as any parent should. All my love.
Ben Sowry.
x
bennysowry 1 year ago
what a terrible story. i wish nothing but good things for bryce and his family.
mthzb 1 year ago
God bless bryce and your family.
noblenirvana 1 year ago
I am so sorry that your family is going through this. What a gorgeous little man....
shannonsmith1977 1 year ago
He's beautiful.
crusage 1 year ago
I really don't know what to say. Your son is gorgeous and I am so sorry that you, Bryce and your family have to deal with this heartbreaking situation.
o0Splat0o 1 year ago