Alyssa Phillips is 16-years-old, but you might not know that if you met her.
She suffers from tuberous sclerosis, a genetic disorder that has caused tumors to grow in Alyssa’s kidneys, heart and brain.
She is unable to function on her own, plagued by daily seizures and also undergoing chemotherapy.
In the Phillips’ two-story home, it takes at least two people to get her upstairs to her bedroom.
“I can’t carry her,” said Alyssa’s mother, Susan. “She’s almost the same size I am. I have myself and a nurse here and we can’t carry her. So the only way to get her downstairs or to a hospital to get treatment is to call an ambulance.”
That’s another expense the Phillips family can’t afford -- on top of mountains of payments for insurance and medications.
But Susan says the family’s garage might be the answer. They want to convert it into a first-floor bedroom for Alyssa so she will be easily accessible in case of emergency, or just to go out and play like any other child.
“That’s my baby,” Susan said with tears in her eyes. “I want her to be able to get out of the house and do something. I don’t want her to be stuck in a room 24 hours a day because nobody can move her.”
So now the family is passing out flyers and trying to get the community’s support for their Walk for Alyssa. They’re using the event to raise money for the garage conversion.
The Phillips have already raised $1,000 needed for permits to start the project. With the labor already sponsored, they say they need another $5,000 for materials.
It’s a project that Susan says would build not just a new room, but a new life.
“She will have easy access to a bathroom and access to daily showers. She will even have access to do something as simple as go outside and see the outside world.”
The Walk for Alyssa is Saturday, June 9, along the San Antonio River Walk.
Registration takes place from 7 a.m. to 8 a.m. at VFW Post #76 at 10th Street & Avenue B.
The walk starts at 8 a.m. along the museum section of the Riverwalk. The path is wheelchair- and stroller-accessible.
Entry fees are $25 for pre-registration and $27 on site. The fee is $22 for pre-registered seniors, military, teams and students .
To register, contact Susan Phillips at Susan080871@yahoo.com, 210-262-3836 or 210-884-6925. You can also search “Susan Phillips” on Facebook.