erica.georgeerica.george

I have my own etsy store of knitted things and I have one daughter (I am an only daughter too!) and she's 4 years old this year and is about to start kindy soon.

Childhood dementia

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Meet two families dealing with Batten disease, an incurable form of childhood dementia.
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erica.george
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OMG how can this world be so cruel to our kids this is just way too sad and my heart goes out to the families of children with Battens. It makes one realize how we take life for granted, let alone how lucky we are not to have this terrible disease to live with in our family!
8 mths
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I had never heard of Batten Disease. How truly sad for the children and the parents. Thank-you for sharing your story. What a beautiful child.
8 mths
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What loving families coping with heartbreaking circumstances.
8 mths
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I hesitated to comment--in the face of such pain and tragedy, all my thoughts of sympathy, or thoughts of encouragement seem so shallow. Those of us who have not had to endure such suffering cannot begin to imagine what you have had to bear. As a mother of 2, and a grandmother of 5, my heart aches for you.
Thank you for being willing to share your lives and the lives of your precious children. I had not heard of Batten disease before.
8 mths
quincyk-kaliwatkins-arleensony.guilda
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My thoughts are with everyone who has to live with this a by this everyday.
8 mths
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I had heard of it before (I'm a twice over member of the Zebra Club*, myself), but this video really paints an accurate and deeply poignant portrait of the day to day life with this disease.
8 mths
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My grandson, Seth, was diagnosed with Late Infantile Batten Disease in Jan 2013. Prior to that they said he was epileptic. Then his seizures got so much worse and the MRI caught several different types of seizures which led to the final disgnosis. Seth passed away on 19 Jan 2014. He had just turned 6 the September before that. This disease is absolutely horrific for a child and those who love the child. It robs them of everything, including their sight and their mind, as Seth had developed dimentia, before it finally takes their life... It's so very sad that government doesn't help research for cures of rare disorders solely because they are rare. Does that make their lives less valuable when gov't funded research could possibly find cures for these types of diseases? It just seems so very unfair. :-(
8 mths
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If people would only slow down & listen a little closer, they'd find that children can be profoundly wise about things like blindness, hearing loss, & death. Their kindness towards other children can make you laugh & cry, jump up & down in joy & frustration & simply amaze you. They're not adults in a smaller form. I think many are much wiser than adults.
8 mths
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My grandson, Seth, was diagnosed with Late Infantile Batten Disease in Jan 2013. Prior to that they said he was epileptic. Then his seizures got so much worse and the MRI caught several different types of seizures which led to the final disgnosis. Seth passed away on 19 Jan 2014. He had just turned 6 the September before that. This disease is absolutely horrific for a child and those who love the child. It robs them of everything, including their sight and their mind, as Seth had developed dimentia, before it finally takes their life... It's so very sad that government doesn't help research for cures of rare disorders solely because they are rare. Does that make their lives less valuable when gov't funded research could possibly find cures for these types of diseases? It just seems so very unfair. :-(
I am so sorry for your loss! It is never easy to lose a child especially to an illness.
8 mths
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God please mercy on all these family, help they get thru' all the tough time. God do love them and I feel so sad.
8 mths
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It's an awful disease that gets no funding because no one has ever heard of it. My foster daughter's brother and sister died of Batten Disease. After their deaths, her father left one day and never came back. He found comfort in drugs and alcohol because he couldn't save his children. Her mother left to pursue a man to take care of her. This beautiful young girl was fifteen. She lost everything, and she had survivors guilt. She was so worth watching grow up, and her parents missed it.
8 mths
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I just cried my eyes out watching this, I have a 20 month old son Riley. I have been working so much lately and have been so distant as a mother to my children. I feel so selfish and horrible. I am so heartbroken that he was taken from you guys, it is very evident that he was your life. I love my kids but don't feel that I appreciate or spend enough time doing even just small stuff with and for them. Life is so unfair-I am just beyond sad and hurt for you. This should inspire all parents to truly love and do for their children/spend time with out of that love. This little boy is so precious and I am so sorry that he was taken so soon. I know you will never be whole again. All I can do is cry.
8 mths
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