Hello everyone,

There is so much going on, so much to share and so much to thank God for!  Thank you so much for ALL of your prayers for our family, for God to lead those that need to see a program, read an article, or hear about something about Noah and Alexis's story.  God has moved, once again, in mighty ways and we are completely overwhelmed by all that He is doing.  I have so much to share, but, right now, I'm only going to share one story.  Lilly's story.....

I received a Facebook request from a mother on Saturday.  She sent me a message with her request and told me about her daughter, Lilly.  Lilly was diagnosed with Cerebral Palsy when she was a baby, then, later, diagnosed with "undiagnosed" Mitochondrial Disease.  Lilly's dad, Steve, was on the board of directors for the Mitochondrial Foundation and Gay, Lilly's mom, was incredibly active and told hundreds of parents about misdiagnosis of Cerebral Palsy.  Two years ago, they decided to have a muscle biopsy on Lilly to see if they could find something to help Lilly's treatment.  Lilly is currently 14 years old so she would have been 12 at the time of the test.  The family had put this off because all her chromosomes were normal, her brain scan was normal, she tested negative for any syndrome, it they were told it only left them with a diagnosis of mitochondrial disease. They actually put on paper ‘undiagnosed mitochondrial disease.’ and, originally, decided not to do another painful test for Lilly for what seemed to be only confirmation of her diagnosis.  Once they learned there could be some helpful information from it, they moved forward.  After undergoing the test, they were told the result was negative for Mitochondrial Disease.  Lilly's doctor called her parents and told them, even though the test is negative, Lilly does have Mitochondrial disease.  Another neurologist they sought out said absolutely not - the results are negative.

Gay, Lilly's mom, heard the NPR radio piece that was done on Noah and Alexis on Saturday.  She requested to be friends on Facebook with me, then sent me a message.  I called her on Sunday, she shared Lilly's story with me and asked if we could come to their home in La Jolla to give me her impressions of Lilly.  Lilly also desperately wanted to meet Noah and Alexis.  Noah, Alexis and I went to their home on Tuesday night.  As we sat in the living room, I watched this family of three, laughing, telling jokes, sharing their lives.....and the entire time I could see the underlying pain in their faces, pain that was so real to me, so close to my heart, pain that doesn't go away because you are constantly reminded of the sheer inability you have to release your child from the chains that are trapping them, the wrenching, deep pain that you don't let anyone else see because you can't, you have to be the strong one and continue forward, the pain of loving their daughter beyond words, the willingness to do absolutely anything to help her and, yet, as many things as you do you still can't seem to release her from her pain.  They didn't openly share their pain with me, in fact, they were trying everything they could to cover it up....but it was there and I could feel it.

We fell in love with Lilly.  When we came into the house, Lilly was laying on the couch.  She was in a beautiful dress, her hair was up and her beautiful spirit immediately grabbed all of us.  We sat in the living room and talked for over an hour.  Lilly would try to talk, struggle to communicate, we would all be silent while Gay and Steve would listen, intently, trying to understand what she was saying so they could relay her words, her thoughts to us.  Lilly was bright, she was delightful, she was witty....she was trapped.  She couldn't get her words out because her muscles wouldn't cooperate, she couldn't sit up, she couldn't keep her head up......she couldn't do so many things that she so longed to do.  But she continued to try, she continued to fight to be in the conversation, to be a part of our time together, she continued, determined not to give up.  Determined is one of the many descriptive words I would use for Lilly.  She is one determined young lady.

We moved to the dinner table to enjoy some pizza and salad together.  Steve picked Lilly up and sat her down in an adaptive chair, that was very upright, and belted her into it.  Lilly tried to hold her head up so she could see us, but the struggle was to no avail. She tried to speak and share her thoughts, but her muscles around her face and her mouth were uncooperative.  Lilly refused to give up, refused to check out and refused to stop listening to every story that was told.  She was soaking it all in, she was determined not to miss anything.  Steve shared funny stories with us and made us all laugh.  He also shared heart wrenching stories with us in ways that were intended to be light hearted, it was painful, but, at the same time, it was exactly where we were suppose to be, watching, listening, taking in their lives, their journey, their struggles, their successes, their love for their daughter.  We took it all in, as we sat listening to stories and sharing some of our own, Noah, Alexis and I were taking in every moment, the things that were spoken and the things that remained unspoken.  We were taking it all in.

After 3 hours, we knew we needed to get home.  On our way out, we stopped at Lilly's bedroom.  Steve and Gay laid Lilly on her bed as she was unable to sit up.  They tried to hold her face up so she could say goodbye, they tried to help her communicate with us, they tried, she tried, but Lilly was unable to muster up the energy, the ability.  If sheer determination would have helped, she would have been able to do it all.  But sheer determination couldn't cause her muscles to work, sheer determination wouldn't allow that sense of humor, that wit, that intelligence to be released to share all the thoughts that she so desperately wanted to get out.  But we saw Lilly for who she was and we fell in love with her and her spirit.

Lilly started on Sinemet last night, the drug Noah and Alexis are on.  Dr. Friedman has reached out to Baylor College of Medicine, asking if she could be sequenced.  Lilly needs all of our prayers, right now.  Please pray for Lilly, pray that she will respond to the medication, pray that she will be released from the inability to move and function, pray that she will be set free and have new life.  Please pray for Lilly, for Gay and for Steve.  Please, please, please pray........

God is moving, He is answering prayer in amazing ways, we have received so many phone calls, emails, etc. and He is working in so many hearts.  I have so many more stories to share with you, so many answers to prayer. But for now, please pray for Lilly.

Love

Retta