Frazer wrote an article...Check it out if you can :)

My daughter is fighting a rare disease. A ‘streamlined’ FDA won’t help her

https://www.statnews.com/2017/03/17/rare-disease-batten-fda/

March Update

Up, up and away!!!

Infusion time!

Riding at the Richey Ranch :)

Hello from Columbus!  I decided to get a quick word in while Elle is napping.  

She just finished her 13th infusion a couple of hours ago and it went just fine.  

We flew into Columbus yesterday afternoon and got settled into a new place - the sweet and generous people that have selflessly housed us since last October, are moving...so now, we are staying at the apartment of another (extremely kind and gracious) Batten family that also commutes to Columbus for infusions but on opposite weeks.  The apartment is close to the hospital and close to a few other Batten families that live here, so we are excited about that!

Elle barely slept at all last night after about 1am, so we were both pretty exhausted starting the day - she has been sleeping hard for over 3.5hrs now, partially due to the lack of sleep, I'm sure, but I think her reaction to the infusion as well just wears her out.  

We have spring break this week, so the 4 of us drove to Birmingham for a few days to visit my family (and celebrate my dad's birthday and rode my parents' horses, which the girls LOVED!) and then Frazer, Elle and I drove back to Memphis Tuesday in order to make it back in time for a neurology check-up and then to fly out to Columbus yesterday.  Ann Carlyle is staying in Birmingham for the rest of the week playing with cousins, grandparents, aunt and uncle.  I'm so glad she is able to stay there and do something fun and special during her spring break, especially since it's an Ohio-week.

Please pray for the rest of our time in Columbus and that we will make it back home safe and sound.  Pray, too, that Ann Carlyle will make it home safely this weekend (my mom is bringing her home and will stay a couple of days).

There are some changes coming with the infusions - nothing huge - but a change in the day of the week Elle will get infused and a change in the hospital area where she gets the infusion (inpatient vs outpatient).  Also, we will probably have some extended trips to Columbus coming up due to 24hr EEG and other testing.  So, really no big deal, but just having to deal with logistics and that gets tiresome.  (Shout out to Leigh, Molly and Kathy that make the world go-round when it comes to the logistics of my life!  A lot of this change makes more work for the - so thank you, friends!). Pray that soon, the enzyme drug will be officially and commercially approved by the FDA and that we will be able to get it a lot closer to home.  (As thankful as we are for Columbus and our medical team here, this would be life-changing for our family.)

Thank you for the continued support.  My heart has been heavier than usual the past couple of weeks, but I do feel that God has given me an added measure of comfort and peace this week and for this I am so grateful.  Please pray for us all as we continue to navigate these valleys and this grief and the changes and the unknown and the hope and the exhaustion and the sadness and the joy (that we are sometimes surprised to still have).  Thanks be to God, Who, morning by morning, brings us new mercies and knows just what we need.

Elle-belle is finally awake!  Gotta run.  :)

Much love to you all!

Dana

Milla's House Press Release

We are so excited to announce the opening of Milla's House!  See below...

MEMPHIS, Tenn.,  March 1, 2017- Baptist Memorial Health Care announced today it will be opening two new grief centers; one in midtown Memphis and the other in Jonesboro, Ark., where Baptist has one of its 17 hospitals, NEA Baptist Memorial Hospital. 

Baptist opened the area’s first grief center, the Kemmons Wilson Family Center for Good Grief, in 2005. The midtown location, the Kemmons Wilson Family Center for Good Grief, Milla’s House, will open this summer on the grounds of Idlewild Presbyterian Church. Baptist also spearheaded the area’s first grief camp for children, Camp Good Grief, in 1999. 

The NEA Center will open in October at 1717 Executive Square and will offer free grief counseling and seminars to those in need. 

The model of care at both grief centers will mirror the services and programs available at Baptist’s original Grief Center, which, according to Baptist leadership, has grown exponentially under the leadership of executive director of bereavement Angela Hamblen Kelly.

The Kemmons Wilson Family Center for Good Grief, Milla’s House, is named in memory of Milla Gieselmann, the 6-year-old daughter of Memphis couple Frazer and Dana Gieselmann. In November 2016, Milla died from Batten disease, an inherited neurodegenerative disorder for which there is no cure.  

The Gieselmanns’ 5-year-old daughter, Elle, also tested positive for Batten disease, while 8-year-old Ann Carlyle tested negative and is healthy. The Gieselmanns have relied heavily on the Grief Center, and Milla’s father, Frazer Gieselmann, says the Center continues to be essential to their family's journey through a grief that is complicated and messy. He emphasized that the Center had not only been essential to his family, but to his extended family and close friends, as well. 

Dana Gieselmann, Frazer’s wife and mother of Milla, Elle and Ann Carlyle, said, “The Memphis community has benefitted greatly from the Center for Good Grief, and it is our great pleasure to have the opportunity to support the opening of the Midtown location, while also honoring our daughter Milla. Her short life of six years touched so many. Our hope is that Milla's House will provide the help our community needs to deal with the reality of living in a broken world.”

For more information about the grief programs available at Baptist, please visit www.baptistonline.org.