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9 entries.
wrote on Thursday, October 10, 2013
at
3:58 AM
25 years ago no one could tell us what was happening to our little girl. It was about nine months after her death that we first heard the probability of Alper's Disease. Thank you for your web site. It helps when people can connect with other who understand what is happening.
wrote on Tuesday, August 6, 2013
at
2:59 AM
I lost my son, Sterling, to Alpers in April at just over ten months old. We got the diagnosis a week before he passed. It's been a hard journey made a little easier by knowing that I'm not alone. My heart goes out to you and everyone else that also has to suffer through losing a loved one to this disease.
wrote on Wednesday, February 13, 2013
at
6:43 PM
I also lost my daughter to Alpers, she passed when she was 2 years and 5 days old in 2006. I will miss her forever.
wrote on Friday, August 31, 2012
at
2:29 PM
I am so sorry for the loss of your beautiful girl. I lost my son Drew and my daughter McKenna to Alpers Disease. My thoughts and prayers are with you. thank you for raising awarenes. I hope that some day soon we will find a cure.
Shannon Olson
Lakeville, MN
Shannon Olson
Lakeville, MN
wrote on Thursday, April 26, 2012
at
6:16 PM
To Gammy,
What you wrote is so true. It has been six years since Hailey left us and my heart goes out to all of you.
Bringing awareness to this insidious disease is the best way to honor your precious Veronica. Keep up the wonderful work. You are in my thoughts and prayers.
What you wrote is so true. It has been six years since Hailey left us and my heart goes out to all of you.
Bringing awareness to this insidious disease is the best way to honor your precious Veronica. Keep up the wonderful work. You are in my thoughts and prayers.
wrote on Tuesday, March 27, 2012
at
10:28 PM
Dear Erica and Doug,
I want to say that as a mother (and wife to Jeff whom wrote on March 20th, 2012 of our daughter, Aimee) we have lost one child before this and I know how you are feeling at this moment. Please know that with time it seemingly gets better, but alas you long for that little hand in yours, the hugs and giggles and smiles. I want to thank you and your family for the out reach of support for my family at this time as we walk down a path of uncertainty again with Aimee.
I want to say that as a mother (and wife to Jeff whom wrote on March 20th, 2012 of our daughter, Aimee) we have lost one child before this and I know how you are feeling at this moment. Please know that with time it seemingly gets better, but alas you long for that little hand in yours, the hugs and giggles and smiles. I want to thank you and your family for the out reach of support for my family at this time as we walk down a path of uncertainty again with Aimee.
wrote on Tuesday, March 20, 2012
at
6:30 PM
Erica & Doug,
On December 23rd my wife and i rushed our daughter Aimee to the ER with some minor twitching in her hands and feet, that turned into strong, repetitive focal seizures by the end of the day. after spending 5 days in a Pentobarbital coma, they brought her out and we got her transferred to a hospital not 400 miles from our home. she had a DNA test done at the beginning of January, and that came back last week as alpers... she's now in a sub-acute facility, having survived the PICU stay. however my wife and i are concerned that our older 2 children will never get to have Aimee home to play with again.
Blessings to you and your family, hugs to everyone. losing a child is not something anyone wants to do, or should have to do. in 2009 we lost a child, and now we are going through it again.
Love,
Jeff and Shaunny
Andrews AFB, MD
On December 23rd my wife and i rushed our daughter Aimee to the ER with some minor twitching in her hands and feet, that turned into strong, repetitive focal seizures by the end of the day. after spending 5 days in a Pentobarbital coma, they brought her out and we got her transferred to a hospital not 400 miles from our home. she had a DNA test done at the beginning of January, and that came back last week as alpers... she's now in a sub-acute facility, having survived the PICU stay. however my wife and i are concerned that our older 2 children will never get to have Aimee home to play with again.
Blessings to you and your family, hugs to everyone. losing a child is not something anyone wants to do, or should have to do. in 2009 we lost a child, and now we are going through it again.
Love,
Jeff and Shaunny
Andrews AFB, MD
wrote on Friday, December 23, 2011
at
11:04 AM
A month, a year, decades… we will always miss you. Thinking of you...
wrote on Monday, November 28, 2011
at
7:16 PM
Erica and Doug,
I wanted to inform you of the progress I’ve made at my hospital with your pamphlet on Veronica’s illness. Unity is an Allina hospital and 80% of the hospitals and clinics are owned by Allina here in Minnesota. I’ve posted the pamphlets in the Doctor’s lounges downstairs and have given the information to the nurses I work with. Nurses are always fascinated with some disease they have never heard about let alone many of the nurses are young parents like yourselves and really feel connected to your story. I’ve sent many people to the Alpers web site and hope to send more in the near future.
Tomorrow I’ll take the phamphlets upstairs to the ICU and the upstairs doctors lounge and post them. Of course I know the nurses and doctors there since I worked there 20 years until I went to PACU(Post anesthesia recovery). However, I am going to Florida for Christmas with sister-in-law, Sally Bowles, on the 20th and will return the 28th. After that I will talk with the Nursing Director about giving the information at what ever meetings I can attend in ICU. Usually, we can bring information to the entire staff at their monthly meetings. I printed off the picture of the 3 of you dancing together at Mark’s wedding. This actually had one young nurse crying because of how normal and happy you all were and like I said they identify with this family picture and can’t believe the horrific outcome a little recessive gene can cause. Let me know what you think.
Auntie Pam
I wanted to inform you of the progress I’ve made at my hospital with your pamphlet on Veronica’s illness. Unity is an Allina hospital and 80% of the hospitals and clinics are owned by Allina here in Minnesota. I’ve posted the pamphlets in the Doctor’s lounges downstairs and have given the information to the nurses I work with. Nurses are always fascinated with some disease they have never heard about let alone many of the nurses are young parents like yourselves and really feel connected to your story. I’ve sent many people to the Alpers web site and hope to send more in the near future.
Tomorrow I’ll take the phamphlets upstairs to the ICU and the upstairs doctors lounge and post them. Of course I know the nurses and doctors there since I worked there 20 years until I went to PACU(Post anesthesia recovery). However, I am going to Florida for Christmas with sister-in-law, Sally Bowles, on the 20th and will return the 28th. After that I will talk with the Nursing Director about giving the information at what ever meetings I can attend in ICU. Usually, we can bring information to the entire staff at their monthly meetings. I printed off the picture of the 3 of you dancing together at Mark’s wedding. This actually had one young nurse crying because of how normal and happy you all were and like I said they identify with this family picture and can’t believe the horrific outcome a little recessive gene can cause. Let me know what you think.
Auntie Pam
