Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Thursday, March 7, 2013

Spending a Weekend with Two Rett Angels: Spiritually Touched

This past weekend I did not make it to church, but you do not have to go to a place of worship, to feel spiritually moved. The Good Lord is with us always, and over the last couple of days, I've been thinking about a trip to Baltimore, that I will no matter how valiantly, fail to put into its context with mere words. I had met a little girl with Rett Syndrome before, which is a  neuro developmental disorder that affects mostly girls. Estimates of occurrence are somewhere in the 1 in 10,000-15,000 range, but be assured that girls are born with this each and every day. According to, it is as prevalent as ALS, Cystic Fibrosis, and Huntington's Disease. There are several foundations, and scientists from international locales working on a cure.

My sister from another mother Lisa, has a daughter named Ashley. I had seen pictures of videos of her before, but never had the chance to meet this twenty four year old princess. The same goes for Ronna, a kind lady from fairly close by, who's daughter is named Amanda. She is twenty five, and both of them look like they are twelve, truly both are gorgeous. They are cherubic angels, and I am so grateful for the chance, to have spent time with these wonderful families, that are resilient in all aspects. As soon as I met these two young ladies, I was deeply moved. There were lots of tears and smiles, because looking into their eyes, you can see the power of love, innocence untouched by the sometimes conflicted environments we all live in, along with proof of a spiritual connection that all of us have. 

Both girls had their dolls with them, and I cannot even begin to fathom, what their mothers went through as they learned their beautiful girls had Rett Sydnrome. These girls and their families deserve a cure. Until then, they have earned our respect. Both were non-ambulatory, and have had to fight seizures and a whole host of health issues. They've both fought through numerous surgeries, including invasive ones, that left me in tears just thinking about what they involved. Yet they don't give up, and likewise their families don't either. Both Lisa and Ronna are fighters in every sense of the word, and my hat also goes off, to the siblings of these two beautiful young ladies. Grant and Rebekah, you have not only made your parents proud, but you also have made the world a better place. You have fought tooth and nail at every stage, along with continuing to educate the next generation, which is how a cure will be found. Sue, you are an angel too.

I cried upon leaving both of these girls. There is no shame, but rather a heavy heart, because just being close to them, meant so much. There were just so many lessons this past weekend, and while sadness was part of it, there was also joy, laughter, and much happiness to boot. If I had a glass of wine in my hand right now, I would toast these families, and both Amanda and Ashley. They are champions, they don't quit, and show us that life is to be valued. Looking into both of their eyes, or getting smacked on the head, was one of the best times ever. Thank you to both of these young ladies, and to their families for sharing them with me for a few moments, that have provided a lot of peace and more of an education that I had prior to this weekend.


  1. Mike, you are to be commended, for you are one of few who take the time out from your busy life, to come out and be with 2 families such as ours! My daughters and I were grateful to have met you, Lisa, Ashley, Grant, Sue and the bunch that were also there! It was truly an awesome weekend for us, and we were so happy to meet you, and happy to share our story, as well as share Amanda with you. Without that, how would anyone on this earth learn of our girls, about their history, about their fight of the Rett Monster, and about their will to keep fighting? And I thank you for your conversation, your ideas, your questions, because all of that is what makes "getting it out there" possible! Thank you! =)

  2. Ronna,

    It was an honor, seriously an honor, an eye opening experience, and the love that you and Lisa have for Amanda and Ashley, and their love, that can be seen in their eyes, just has left me still in pure awe. There are times, well you know the deal, where we question everything in life. That weekend has provided much spiritual food, much opening of new directions, and I'm so glad to have met you, Lisa, everyone, and of course the two wonderful angels. God bless you and big hugs! And one day God willing, I hope all of us can get out there and do some horse riding.