Please feel free to leave us a note. We love you all and appreciate your thoughts. As time marches on, we carry your words with us. Thank you, one and all.
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.
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.
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.
Jeff and Shaunny
Andrews AFB, MD
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.