Losing a child is the worst most horrible things in the whole world to me for any parent. Then, to know a child, that you loved in your heart and prayed for every night then...... they just die... really effects you emotionally besides physically. We have lost many children in to SMA. I hate this disease its steals the lives of children. Sweet innocent children. We lost a good friend's child last week. I, seriously got weak in the knees and physically ill when I found out she had earned her angel wings. Her parents are some of my heros for their fight to save their daughter and to help children affected with the same disease as Lizzy. They helped fund Stanford trial that Lizzy was apart of. We have been on this road together since the beginning. Just talked to her Mom right before she passed. We were planning on getting Lizzy and her getting on Skype together. The child's name Aleena Hope Miller. Beautiful Aleena left this earth October 6th. I am honored to have met her. http://www.aleenahope.com/
http://brookhaven.patch.com/articles/aleena-miller-7-dies-bravely-fought-severe-genetic-disorder
My heart is just broken. I need to celebrate her life not dwell on her passing. She was a true miracle child that through her parents and all that met her inspired so many. Thank you , sweet Aleena for being in our lives even from afar. Lizzy had you in our prayers every night. Please, watch over your Mommy and Daddy. Send them signs from heaven that you are at peace.
(Okay, I am wiping the tears away for like the 100th time since last Friday) still hurts.
I am missing going to California these days. It was a needed break every time we went. We have not been there in over a year and since DR.Wang is no longer at Stanford . We do not go out there anymore. I miss the people, the weather and the welcomed break!! How I long to go back there!! Not in our future though or going too far from home. Lizzy has gown and we need a bigger van for all her things she has to have and for her to travel comfortably. Our van has too many miles and too much needs fixed to be safe for a long trip. Maybe ,when things get better with the economy and Paul is able to work. we can get one. He is healing but still in a lot of pain.
Lizzy had a wonderful party on October 1st. Every year we try to make her birthday special.
Her cake was all eatable!!
Elizabeth is doing pretty well. The occasional sinus infection but other than that she is fine. Growing so much. She needs a new TLSO, some adjustments on her power chair because of recent growth spurt. She is doing well with school work with her tutor. Can you believe it she is eight years old?? She got some surprise gifts in the mail!! Thank you!!
My daughter Dawn had surgery today on her back to remove a nodule. She went through getting her thyroid on both sides taken out a few years back because they found cancer. Now, a few months ago a new nodule appeared on her back. They say its not cancerous but sent the nodule off to be tested. Please send healing prayers her way.
Send prayers to Sophia D whom has not been feeling well and add MJ too, as she is in the hospital.
Thank you to all that are in our life."A faithful friend is the medicine of life."
"We believe in miracles because we live with one!"
www.our-sma-angels.com.com/elizabeth
http://brookhaven.patch.com/articles/aleena-miller-7-dies-bravely-fought-severe-genetic-disorder
My heart is just broken. I need to celebrate her life not dwell on her passing. She was a true miracle child that through her parents and all that met her inspired so many. Thank you , sweet Aleena for being in our lives even from afar. Lizzy had you in our prayers every night. Please, watch over your Mommy and Daddy. Send them signs from heaven that you are at peace.
(Okay, I am wiping the tears away for like the 100th time since last Friday) still hurts.
I am missing going to California these days. It was a needed break every time we went. We have not been there in over a year and since DR.Wang is no longer at Stanford . We do not go out there anymore. I miss the people, the weather and the welcomed break!! How I long to go back there!! Not in our future though or going too far from home. Lizzy has gown and we need a bigger van for all her things she has to have and for her to travel comfortably. Our van has too many miles and too much needs fixed to be safe for a long trip. Maybe ,when things get better with the economy and Paul is able to work. we can get one. He is healing but still in a lot of pain.
Lizzy had a wonderful party on October 1st. Every year we try to make her birthday special.
Her cake was all eatable!!
Elizabeth is doing pretty well. The occasional sinus infection but other than that she is fine. Growing so much. She needs a new TLSO, some adjustments on her power chair because of recent growth spurt. She is doing well with school work with her tutor. Can you believe it she is eight years old?? She got some surprise gifts in the mail!! Thank you!!
My daughter Dawn had surgery today on her back to remove a nodule. She went through getting her thyroid on both sides taken out a few years back because they found cancer. Now, a few months ago a new nodule appeared on her back. They say its not cancerous but sent the nodule off to be tested. Please send healing prayers her way.
Send prayers to Sophia D whom has not been feeling well and add MJ too, as she is in the hospital.
Thank you to all that are in our life."A faithful friend is the medicine of life."
"We believe in miracles because we live with one!"
www.our-sma-angels.com.com/elizabeth
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