July 21st

We have a lot to report in the update for last week.

Ashley continues to make important gains. Ashley began squeezing her left hand a while ago. In fact we bought a nerf dart gun for her to shoot. She would occasionally get off a shot after a bit of encouragement. Well now there is no mistaking that Ashley can squeeze that left hand – hard! She is also now squeezing her right hand which is great news.

Another noticeable change is the amount of vocalization that Ashley is doing. It used to be very difficult for her to create sound. Now she not only is doing so on request, but she is doing it on her own. We aren’t hearing words yet, but it is just a matter of time now.

Last week Austin and I attended a conference on Rare Neuroimmunilogical Disorders (say that five times fast). This was coordinated by the Transverse Myelitis Association. Transverse Myelitis is to the spinal cord what ADEM is to the brain (demyelinization of the axons). Both diseases are quite rare. This will give you a perspective. This year 1 in 600 Americans will experience a stroke. For Multiple Sclerosis that ratio is about 1 in 50,000. For Transverse Myelitis it is estimated to be 1 in 200,000. For ADEM (Ashley’s condition) it is thought to be 1 in 2,000,000.

There were probably 50-75 people with Transverse Myelitis at the convention. There were only 2 people with ADEM. We had the pleasure of meeting those two incredible individuals. Jodie is from London, England. She encountered ADEM about a year and a half ago. Jodie shows very few outward signs of the disorder. George is from Miami, Florida. He came along with his wife, sister and brother in-law. George also was afflicted with ADEM about a year and a half ago. George is working on refining fine motor skills and some cognitive issues. Jodie, George and Ashley have a common bond; all three were living blessed lives and now they are working harder than anyone can imagine toward restoring their abilities. Both Jodie and George were very encouraging. They told us that they have fought the battles Ashley is facing and they progressed. We will certainly put Ashley in touch with both of them. We know their direct encouragement to Ashley will enhance her determination to continue to work hard toward recovery. They will serve as excellent role models.

In addition to the friendships we made and the stories of encouragement we heard we were also exposed to a lot of information from experts in these rare conditions. A wide range of topics was covered in three full days of meetings. We are anxious to translate what we have learned and apply it for Ashley’s benefit. As we do so we will be sure to provide you with updates as to how our new found knowledge is translating into gains for Ashley.

The symposium was also our first opportunity to meet Sandy Siegel face-to-face. Sandy's wife Pauline contracted Transverse Myelitis over a decade ago. At the time there were scarcely any resources on the condition. Sandy was instrumental in founding, and is the president of the Transverse Myelitis Association. When we first were told that Ashley was suffering from demyelinization we turned to the internet for information. We found the association and that lead us to Sandy. Sandy immediately returned our call and put us in touch with Dr. Greenberg at Johns Hopkins. Over the past year Sandy has proactively contacted us with information. He has helped countless others in seeking assistance with these rare conditions. The association website is www.myelitis.org. Your support of this organization would be greatly appreciated.

On another note we want to encourage the mantra Ashley’s friend Emily has started of praying for “Walking, Talking and Eating”. We are seeing progress in all three of these critical areas and we know the power of prayer is a main contributor. As such we ask all of you to include in your prayers for Ashley that she continue to improve in her ability to walk, talk and eat.

We are excited and thankful for the strides Ashley has made over the last year. We are also more encouraged than ever that Ashley will make a remarkable recovery. Thanks to all of you, that through your support and prayers for Ashley, we are not facing this alone.