Acromegaly is not that rare. The University of Maryland Medical Center reports six cases in every 100,000 people, but the association says many cases go undiagnosed or under-treated because doctors are not educated enough about the disease.
If acromegaly is not diagnosed and treated, it can lead to serious damage to vital organs, such as the kidneys, liver, thyroid gland, spleen, pancreas, and parathyroid glands.
Symptoms generally develop slowly over years. Left untreated, it results in altered facial appearance and enlargement of the hands and feet.
In Tanya's case, the medications and prior surgeries have failed to stop the growth.
Her shoes -- 15-1/2 at the moment -- have to be custom-fit and her ring size has jumped from 6-1/2 to 20. Like others with same condition, she has headaches, tiredness and sleep apnea. She wears an oxygen mask at night.
The tumor has also caused arthritis and diabetes insipidus, which makes it hard for her body to maintain hydration.
Though she was once able to walk, her knees can no longer hold her weight, so she is mostly confined to a reclining wheelchair. Lying flat on her back is not only painful, but dangerous because it puts too much pressure on her fragile organs.
Tanya is on multiple drugs, including a cold, thick-Vaseline like medicine that her mother injects once a month. Much of the medication is for her excruciating pain.
The family has health insurance, but they have already spent $200,000 of their own money on her care. The medicines alone cost $45,000 a month.
"My husband is running out of CDs," said Strutynski. "We bought a 22-foot motor home to travel east, and bought it on a loan and there wasn't enough for a downpayment, so he traded in his Corvette."
Everything in her home is custom made, from her reclining wheelchair to the enormous bed with a specially-padded mattress.
As a former horseback rider and swimmer, Tanya finds being weightless in the backyard pool therapeutic, although it takes two people to get her in the water.
"Karen and Allen [Strutynski] came and wanted a lease for their daughter and told me she had gigantism," said Valle, 53, who lives in New Mexico.
"I thought OK, I have seen that in books, but when I saw Tanya came in -- wow -- she is big, she is really big," she said. "And she weighed a lot more at the time. But her personality came through so fast and her size dissipated and I fell in love with her right away."
"She is the kindest, sweetest, most loving girl," said Valle. "When people meet her they want to give her everything and want to do anything for her."
Tanya's tumor is tangled around her carotid artery, which makes surgery complicated. But if she makes it through, Tanya will undergo another one to reinforce her spine.
Despite the setbacks, Tanya's mother said she is "hopeful" for success.
"Two years ago, they told me she was terminal and I asked, 'Where is her date stamp?'" said Strutynski. "She's a fighter and she knows mom is here and will fight with her."