Our story begins with Lace Ann Mitchell telling us about her two children, Stacy and Michael, and the rare disease that affected them at birth.
The mysterious illness is characterized by an inability to swallow, difficulty breathing, low muscle tone and contracted fingers.
Stacy, the oldest, was in the NICU for six and a half months before she passed.
Then came Michael. Lace says, “He was born without any muscle tone in his entire body. He turned blue and started coding when they gave him his first bottle.”
He was exhibiting the same symptoms as his sister Stacy. Doctors performed test after test, but they all came back, inconclusive.
Baby Michael was a medical mystery.
Little did they know, across the country, another family was in the midst of the same struggle to find an answer.
Burlington, Kansas is a small town that appears from a sea of cornfields and where the Hanners reside.
Trinity, thirteen, is their oldest. Hanna, her mother, proudly and lovingly speaks about her, “She is more sporty, a little more laid back, plays video games, plays basketball with the boys, that kind of thing.”
Her illness has affected her speech, so Trinity is non-verbal.
She behaves just like any other thirteen-year-old. She walks, runs, and rides her bike.
The Hanners have another child named is Addison. She is ten-years-old.
“She is sassy, she doesn’t stop talking, she still has her wheelchair and she is just learning to walk,” said Hanna.
Her mother describes the children as two halves that make up a whole because where one child lacks, the other makes up.
But, like the Mitchells, the Hanners still had questions about their children’s health.
Hanna gave birth to Trinity at thirty-two weeks. She explains, “After the birth, the doctors knew something wasn’t quite right. She was completely purple and blue from head to toe. Then they started noticing other things, like some of the joints in her fingers were fixed, she couldn’t open her hands straight.”
Trinity also had no muscle tone, difficulty breathing, and she couldn’t swallow.
5 months passed before Hanna and Steve could bring their daughter home, but not without monitors, a feeding tube, and oxygen.
After months of medical testing, the doctors didn’t come up with anything and told the Hanners that “It’s just a fluke deal, there is no reason you guys should have to worry.”
Wrong. The Hanner’s second daughter was also born prematurely with low muscle tone, inability to swallow and difficulty breathing.
The Hanner’s lives were now consumed by hospitals and doctor’s appointments in their desperate and lonely search for answers.
“We went for 10 years not thinking we were ever going to hear anything to all of a sudden, I got a message at four in the morning. There’s another mom. Oh my Gosh! Lace Mitchell, she’s from Houston, she is absolutely amazing!” said Hanna.
Lace Mitchell, Michael’s mother, had contacted the Hanners with very promising news.
Today Michael is a seventeen-year-old who loves football, horses, his iPad, and music. But when he was thirteen, he received a diagnosis.
Michael was only one of a handful of patients identified with Schaaf-Yang Syndrome, a rare genetic disorder on the autism spectrum discovered by Dr. Christian Schaaf at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital.
After Michael was diagnosed with Schaaf-Yang, his mother wanted to let others know about her families new discovery but, because of Hippa laws, Dr. Schaaf was unable to tell her about other families with Schaaf-Yang Syndrome.
Lace goes on, “So I contacted him in 2015 and said ‘I’m thinking about starting a Facebook page, what do you think?’ And, he said ‘Absolutely’!”
Now in 2017, they have over 100 members from around the world including the Hanners, who traveled from Kansas to Houston to meet Dr. Schaaf and the Mitchells.
Hanna and Lace connected and swapped stories and compared behaviors of their children.
“Hanna always says we have a tribe now,” said Lace.
A tribe that continues to grow.
At this summer’s first Schaaf-Yang Family conference, the Hanners realized their daughters weren’t the only surviving siblings with the disease.
They connected with a Canadian family with daughters the same age with the same syndrome.
Every doctor at the Jan and Duncan Neurological Research Institute and Texas Children’s Hospital will tell you it starts with one child, one patient they refuse to give up on. These doctors constantly search for answers, including therapies to help manage symptoms.
Dr. Christian Schaaf says, “We’ve come to understand that patients with Schaaf-Yang Syndrome have a deficiency in growth hormone.”
Soon after Dr. Schaaf suggested growth hormone therapy for Trinity Hanner, the changes were amazing.
“She used to be overweight and only able to walk very short distances. And, within a few months, her body composition has changed. She’s able to walk. She has more strength and it’s really made a tremendous difference in regards to quality of life for her and the entire family,” said Dr. Schaaf.
