Teen seeks to inspire others who have chronic illness
JOSHUA – Haven Watts, 15, has been searching for her new normal – her true north – for quite some time.
The Joshua teen might very well have found it – in the form of a special transplant operation that has changed her life and allowed her to compete in pageants.
Haven said her decision to begin a pageant career was very spur of the moment but it paid off.
Haven was crowned Junior Miss of Texas with the Texas State Pageant at the Wyndham San Antonio Riverwalk in August. This month, she was crowned Junior Miss of America at the American Pageants National Pageant in Orlando, Florida.
“I thought it was a good idea to do it, so I entered the Texas competition and I won,” Haven said. “Then I went to National last week and ended up winning Junior Miss of America. The competition is actually 60 percent down before they even see you, so it’s not really a beauty pageant. You have to do poise and personality and walk across stage in a formal gown. You have to introduce yourself on stage and I think the last five minutes they announce the top two and the winner.”
Haven – currently a sophomore at Joshua High School – suffered many painful challenges getting past her illness to the point where she could compete.
When she was around three or four years old, Haven began experiencing severe abdominal pain, according to her family.
Each time the pain spread, it risked spreading cancer. She was consistently hospitalized for the next 12 years, until age 15.
Haven was finally diagnosed with the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene at the age of 12.
Her genetic condition is a mutation that attacks the nerves and pancreas.
As a result, she has required near-constant medical attention, trips to specialists and a host of medications.
On Haven’s “Caring Bridge” page, her father and mother posted a heartfelt message about her condition. Her mother, Sandi Watts, owns an entertainment business and her father, Shane Watts, is a public works inspector.
“Haven is our adorable, fun, loyal, kind-hearted baby girl,” the parents wrote. “She is currently battling an evil disease that hides ist horrible face and lays in her pancreas. One year ago, we were told she has a ‘simple’ diagnosis of CFTR. In non-medical terms and her Daddy’s best description, this is a mutation of the Cystic Fibrosis gene that is attacking her nerves and pancreas.”
Although the genes that cause these problems are passed from a parent to a child, there wasn’t a lot of forewarning about it in Haven’s family, her mother said.
For instance, Sandi Watts said she spent a lot of time in the hospital as a child for dehydration, but she was never able to get an answer on why it was happening.
Haven wrote about her medical plight at length in the Caring Bridge journal.
“If being a normal teenager wasn’t hard enough, I had become a chronically ill teen,” Haven wrote. “I had to attend school at the program in the hospital while I was an in-patient, and homebound school when I was out of the hospital. I couldn’t attend public school because of pain and illness.”
Last summer, Haven’s condition grew so dire, Make-a-Wish gave her the gift of a cruise to the Bahamas with her family.
Not long after, she was referred to a transplant team at Baylor Scott & White Health in Dallas. That team determined she was a candidate for Auto Islet Cell transplant.
This procedure includes the removal of the pancreas and the extraction of islet cells that produce insulin. The pancreas is then placed into the liver. In this fashion, the liver functions as both the pancreas and the liver.
“They have to wash and dissolve the good parts of the pancreas to get the Islet cells out,” Haven explains. “Some are damaged with less cell and some have more. I think I am in between.”
To her delight, the past year has resulted in Haven’s strong recovery from surgery.
“Due to being on bed rest for such long periods of time, I had to go through physical therapy just to regain my ability to walk and rebuild the 50 percent of muscle mass I had lost,” she said.
As she improved, she went back to school, grew at least six inches and ended up taking less medication. She went from taking 30 meds a day to only four.
In August, she was nominated to be a contestant in the Junior Miss of Texas Pageant in San Antonio – which she won.
Then, she competed in the Junior Miss of America Pageant in Florida earlier this month where she earned the national crown.
However, there was a price.
While all those years of hospital rooms, IVs, and painful side effects came to an end, she has lost 75 percent of her hearing due to the transplant and protocol medication. She now wears hearing aids.
She also lost 45 percent of her hair due to protein breakdown.
She said the experience might cast into doubt her future ability to have children. But if that is the case, the confident Haven said she will look into adoption.
Haven is having the time of her life helping people.
She said she hopes to use her platform as Junior Miss of America to be a voice providing comfort and hope to other students suffering from medical conditions such as hers.
As part of this, she will be participating in fundraisers, and recording country western songs with popular artists.
She also writes her fans and friends “snail mail” letters to help keep track of their lives.
Also, in her capacity as Junior Miss of America 2018, she is planning to hold an event to benefit special olympics in the future.