My family first met Dr. Jones 15 years ago when my daughter Sierra was first diagnosed with Rett Syndrome. She was one of the most loving, kind, sweet spirits I have ever met. She believed in Sierra immediately, that she was intelligent. She traveled from Berkeley all the way to Fresno several times for travel clinics or to advocate. She once made the trip to sit in on Sierra's IEP to educate the public school on Rett Syndrome and advocate for Sierra. Every time we saw Dr. Jones just as we had been giving up on hope for a cure, she got us excited again and hopeful. Her passing is such a great loss to the Rett community. We will miss her deeply. 

Love, The Moe Family

I don’t really even know how to start.. my grandson Conrad has MECP2 and my daughter a carrier.  The weight of this seems so big, and it is.  I felt numb, and that there were very few options when we first learned the diagnosis.  Kelli, our daughter was 5 hours away, with a 6 week old baby (her first, and our first) when Mary answered the Rett Clinic phone and spoke with Kelli.. I spoke with”Grandma Mary”, and she gave me hope.  She gave Kelli hope.  I was able to call and chat when I had concerns.  She was “real”.  I never had the opportunity to meet her, but still loved her for all the work, and admired the help and selfless attitude she had.  I’m sorry for her beautiful light to not be in this realm anymore.  I know she’s working in the lives of the families she loved. 

There was a soft way she entered an exam room, quietly washing her hands, voice low, enough of a smile despite eyes searching for the cause of distress. Hands so tender. “Hey, Mr. Phil.” Low. Eye to eye. Deeply looking and listening. Respect essential to the equation: this relationship to a child and a worried set of parents. One could dare to breathe in her care. Tender is not a good enough word.

Lucky we’d lived in the same condo complex with Mary and Clay. When news broke of our first impending child, and a tentative question was asked, “could you take us on?” our question was rendered irrelevant. Of course. Who knows if her practice was already full? What a stroke of luck to be brought into her fold. Lucky is not a good enough word.

Loss of oxygen at birth. Serious, serious, serious. Beyond serious. Baby boy transported across the bay for NICU care when there was no room at Children’s. There are no words for the abrupt and treacherous chasm; pulled apart. Bewildering information and processes begin, a navigation in high seas. Day 2, Dr. Mary arrives after a long day at work and parts the seas. Li’l Trevor along as sidekick and comic relief! (Who in the Jones household missed their dinner that night? Someone must have, and we apologize.) Through Mary magic, the high importance of protecting our beloved newborn gets understood by all staff. She could read the riot act and make you think she sang you a lullaby. That’s talent. In a place fraught with danger, Trevor’s book of bad words he was very proud to carry and show us, replaced worry with laughter. A very good start on day 2 for our newborn. Very, very good start. And good lesson. Would that we would simply write down our bad words, rather than speak them. (Still working on this lesson, Trev.) This family is a precious gift. Precious is not a good enough word.

That’s just one snapshot. There are so many snapshots. Dr. Mary was our bodyguard. Countless times, over many years, and many dire medical, social, and educational challenges, she took over the scene. Formidable. Calm. Voice low. Enough of a smile. Analyzing the cause of distress and identifying the source of solutions. Singing her lullabies and whipping people into shape. For our son. And carrying our family into a wonderful, wonderful life. Beloved is not a good enough word.

Thank you, Jones family, for being so gracious to have allowed us to steal the gift of Mary, when she rushed in for us every single time. We love you.

Ann, Bernard and Philip Cacho

Dear Jones Family,
This is Ahmed H. EL-Shaer, Trevor's friend from CAL. I first met Trevor in the fall semester of 2003 in Berkeley when I TA'ed a course he was taking. Shortly after, we became research collaborators and more importantly friends. Trevor introduced me to his mom Dr. Mary whose loving, caring and very kind nature were always present in our discussions about graduate studies and research. In the years to come, I got married to my wife Radwa and Dr. Mary became our kid's pediatric. Her clinic visits were just the most joyful, and our memories of her from the Berkeley days awes of kindness and warmth. The last time we met was during Trevor's wedding reception and as usual she was the most loving. Dr. Mary was a great person in all aspects of life, her generous and benevolent heart and her legacy shall live forever. She filled her life with caring for others, and left behind her own children whom she raised in the best of manners. May you rest in peace Dr. Mary.

With all love and care,
Ahmed.

I only met Dr. Mary once for a brief time when she was at the NWRSA Family Conference in 2019. In those few minutes of talking with her she made it clear how much she cared for people with Rett. There was something familiar about her warmness, like she was a caring aunt I'd known my whole life. I did not know much of anything about Dr. Mary, but I knew I wanted to see her again. I did not get the chance. And now here I am browsing through her life, her smiling photos, her achievements, and everyone else's stories about her and I am saddened that I missed out on such an amazing woman. She will live on in many people's hearts, a warm flame reminding us what incredible really means and how many of us can never live up to the bar she raised.

Dr. Mary was my pediatrician at EB Pediatrics when I was a child. She was also my son's pediatrician. Dr. Mary was kind, thoughtful, caring, and amazing at her job. I have a few short stories.

My dear friend and college roommate was sick with cancer 25 years ago. I was scared for him and felt powerless. I called Dr. Mary. She hadn't been my doctor for years, but she called right back that night. She talked to me for an hour. The news wasn't good and, as she suggested was likely, my friend passed away a few months later. But I always remember that call and her caring conversation that helped me come to terms with what was happening.

Flash forward a couple decades and I'm at the hospital with my wife hours after the birth of my son. I'd registered with EB Pediatrics when we'd entered the hospital. Well, guess who showed up in our hospital room to meet my boy? You guessed it: Dr. Mary. I was as excited and terrified and sleep deprived as any new parent. Dr. Mary was like a warm blanket and hot cup of tea. Also, she remembered me right away. Oh yes, there were hugs. Many hugs.

When my son got very sick early in his life, Dr. Mary was my lifeline. My wife and I were scared and sleep deprived again. No one could figure out what was exactly was wrong. Still, she kept us sane and calm. Dr. Mary said there was only one really scary thing it could be and sent us for testing to get it figured out. The news was good. While he wouldn't get better for a few more weeks, Dr. Mary said it would be fine. And it was. We must have talked to her a couple dozen times.

Last story! My first son was a handful as an infant. We went to see her at 6 months and she interacted with him. She then explained to us his personality in detail and how it would evolve as he grew. She explain just how we was going to be amazing and also how it was going to be difficult. And she was 100% right again. She figured out my little boy long before I did. She knew exactly what was going on in his head and she gave us 5 minutes of the best advice I've ever received in my life. 

So that was Dr. Mary. She was a great doctor and an amazing person. She guided me to adulthood, she guided me in parenthood, and she took amazing care of my child.

So RIP, Dr. Mary. Thank you.

May I do half as much good in the world as you did.

Cisco DeVries

I met Mary when I was eight years old. I had experienced trauma by then and by silent agreement she took my heart in hers and mentored me through adolescence, young adulthood, and into motherhood. When my oldest was diagnosed with Rett syndrome, within months of two others, she wrapped us into Katie’s Clinic and a new community of fierce advocates. My life and my family, my children are all profoundly impacted by her caring and her care. To say she will be missed is not enough.