A family in need of help
For The Madera Tribune
Kylee La Plant, center, shows love with her parents Brittney and Jason during a night out when Kylee was feeling better. Kylee suffers from Elhers Danlose Syndrome which causes her joints to have no cartilage, among other ailments.
For most people, 2020 was a year to just battle through and get to the next day. However, 2020 was almost a year to forget for 7-year-old Kylee La Plant and her mother, Brittney La Plant.
Kylee suffers from Elhers Danlose Syndrome which causes her joints to have no cartilage. She needs a wheelchair and walker and it also causes vision and organ problems. She also has Mast Cell Activation Syndrome, which makes her allergic to most things and causes more problems to her organs. She has POTS (Postural orthostatic tachycardia syndrome), which causes her to need 24-hour hydration through and IV port in her chest and it makes her light-headed and even causes her to pass out. In addition, she has gastroparesis, which makes her not tolerate anything in her stomach or by mouth. She gets liquid feeding straight to her heart and liquid fat, as well.
She is in chronic pain, 24 hours a day with no relief, according to her mother, Brittney. She says that Kylee also has fluid on her brain and are checking her for silent seizures and no contraction of her bowels, which makes her need to wear a pull-up. On top of everything else, she has mental health struggles from the constant pain and from having a trouble finding a doctor that can help her.
“Everyone said 2020 was a tough year,” Brittney said. “For me, 2020 was a horrible year, not just because of a pandemic. This little girl went through the ringer. She sees doctors in Los Angeles, Long Beach and Stanford. She’s been the UCSF, UC Davis and Valley Children’s. Now, she’s being sent to Texas Childrens. We just found out they might send her to Rhode Island.”
Although she had been sick her entire life, Kylee was able to function like a normal child, even attending gymnastic classes at TEC Gymnastics.
“She has been sick her whole life, but she could still function,” Brittney said. “Around December of 2019, it got really bad where she was in and out of the hospital. In February, they put a feeding tube down her nose. Things got worse from there. We found out different diseases and diagnosis she had. She couldn’t do gymnastics anymore. Her hip kept dislocating. She had a feeding tube put in her stomach and that was causing problems. She has gotten worse from there.
“Her colon no longer works. She’s back in a pull-up. She has a heart problem. She has a hole in her heart. She has fluid in her brain. They are checking her for silent seizures. She passes out constantly. She has a disease called POTS which causes to randomly pass out. If she stands up too quickly, she’ll fall to the floor. She will be talking to us and pass out on us from 10 seconds to the longest was more than a minute. She’s on 24-hour fluids through a port in her chest. She can no longer handle feedings in the tubes. She’s on total paternal nutrition and that goes to her heart. She’s on lipids because she can’t gain weight. She’s still losing weight. You’re supposed to gain weight, but not my little baby.”
She hasn’t been able to attend TEC classes anymore because of her illnesses.
“She has deterioriated in the last year, health-wise,” Brittney said. “She has always been a gymnast at TEC Gymnastics. She loves gymnastics and calls the owner, Tammi Britton, her Grandma. She got really close to them.”
“This was her happy place and every kid needs a happy place,” Britton said. “She’s super spunky. Her love is gymnastics. When she started getting sick and they had to pull her out, she would come and sit on a block with me and help me coach. I would tell her what to tell the kids and she would tell the kids to make their corrections. She would sit with me for two hours and help because she loved being in the gym.”
Britton and TEC visited Kylee and presented her with a teddy bear almost as big she Kylee, along with other gifts.
“We just gave her a big teddy bear with a TEC shirt with TEC bows and scrunchies to remind her of the gym. The girls signed a card for her,” Britton said.
“She definitely misses gymnastics,” Brittney said. “She’s so susceptible to infection, we haven’t even taken her over to the gym to see her friends. Tammi is going to try to put on a fundraiser for us to get some money. We appreciate it. She’s still a trooper and she will call some friends and that raises her sprits. Her dad was going to sell her gymnastics equipment because doctors think she won’t be able to do it again. She’s like I will get back to it, no matter what the doctors say.”
Because of all the travel expenses and the medical expenses the La Plants have had to deal with, friends have created a GoFundMe page for Kylee (search Kylee Wonder Woman Strong), which has raised more than $2,000 of a $10,000 goal.
“Every month, we have to travel to Long Beach and get a hotel because of everything she’s going through,” Brittney said. “She’s very weak and very frail. She can’t do a six-hour drive to Long Beach, see the doctor and come right back. We did at the beginning and it made her so sick, that it hospitalized her for two weeks. Now, we get a hotel room the night before, go to the doctor and go home the following day. Every time she gets an appointment, it’s a three-day adventure on top of gas and food. Her body can’t handle the travel. We do that when we go to Los Angeles to see her cardiologist and to Stanford.”
Because of Kylee’s illnesses, the La Plants can’t just stay at any hotel. They have to make sure the rooms are clean and disinfected because of how susceptible Kylee is to infection.
“We have become very familiar with what hotels to go through, but it’s expensive,” Brittney said. “At the beginning, we were trying to look for the cheapest to make it through the night. We found out it is not clean. She has a line that goes to her heart that is susceptible to infection. She started to get smoke build-up in her lungs from her being in a hotel room that had smokers. We got admitted to the hospital for that. We have to be particular about what hotels we go to and, unfortunately, they are the more expensive ones. We had to buy a minivan because we are getting a walker and a wheelchair.”
The La Plants also found out they have to go to Texas and may be there for more than a month.
“Now to go to Texas, we have to pay for the airline tickets, food, hotels and anything else,” Brittney said. “We are looking at a two-to-six week stay. They want her there already. We’re trying to coordinate everything with the doctors so she can see a whole team of doctors instead of going back every couple of weeks. The coordination of care is taking longer. Because she’s losing weight and deteriorating, they want her there soon. We’ve exhausted every option in this area and that’s why we have to go to Texas. I had to quit my job in February when she got really sick. I didn’t even give a two-week notice because she was in the hospital.”
The only income Brittney gets is from in-home supportive services taking care of Kylee, but because she’s her mother, Brittney doesn’t get the maximum allowed to a health care worker.
“But because I’m her mom, I don’t get the maximum amount of hours,” Brittney said. “When she is in the hospital, I don’t get paid. If I was a stranger, I would get all of those things, but they say it’s my duty as a mom to pay for these things. I don’t get reimbursed for mileage and appointments. I want to be there and take care of my daughter. I don’t want a stranger taking care of my baby.”
Despite her illnesses, Brittney said they Kylee has tried to remain positive.
“She’s been mostly positive,” Brittney said. “She has her down days. She’s been on suicide watch. She’s had some spots, here and there. For the most part, she’s been strong. It’s been hard to hear a bunch of doctors tell you that they can’t help you, you’re too much for me to handle, you’re too complicated, I don’t know what to do for you or get over it and move on. All of those things are taking a toll. That’s why we would be going to Rhode Island to see a child psychiatrist.
“We call her our little Wonder Woman. She’s very strong.”