Bryce's Battle with Batten Disease

Song: Chasing Cars by Snow Patrol~ Bryce was diagnosed at age 4 with Late-Infantile Batten Disease. Batten Disease is a fatal neurodegenerative (brain) condition. Children born with the condition appear normal until symptoms begin at around age 4 (such as seizures, blindness and clumsiness). Eventually Batten Disease renders children from walking, talking and eating until children become dependant in every aspects of their lives. Batten disease is always fatal and ultimately death occurs in childhood or young adulthood. There is no known treatment or cure for this tragic condition. Research is happening but funds are needed to continue the work of the few dedicated scientists working on it. This is Bryce's story on his struggle with the condition. He is fighting a losing battle. For further information or to make a donation please visit www.battens.org.au

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[sweetDylansmommy]

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!!

[Brycesmummy]

@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

[MrJacksmummy]

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

[Brycesmummy]

@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]

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]

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

[AbneyParkFan]

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.

[BettyCallMeAl]

This had me crying. I'm so sorry.

[MrJacksmummy]

@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]

@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

[lestyboss]

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~

[trippyriders]

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.