Lana is a joyful little girl who lives in Springfield, MO with her mom, Tonya. She will turn two years old in August, and loves to make those around her laugh. She has a heart for animals and enjoys spending time with the animals at her local shelter. She loves to play outside and cuddle in her mother’s lap. While Lana is enjoying all things a two-year-old girl should be enjoying, she is also living with a very rare genetic condition called Neurofibromatosis type 1.
We invite you to watch Lana’s video, read her story, listen to our interview with her mom on our podcast, and support her family through a purchase from our shop!
“Lana has taught me that strength comes within and sometimes it takes something like this to find out how strong you really are. She truly is an amazing kid and a warrior.”
When Lana was just three months old she experienced, what her mother and the doctors thought, was severe acid reflux. Every time she ate she would start throwing up obscene amounts; she could not keep anything down and was projectile vomiting daily. Soon, unusual marks suddenly appeared on her body. They looked similar to birthmarks, but were not present when she was born. Tonya took Lana to the doctor and was adamant that Lana did not just have acid reflux.
After being told again that it was probably acid reflux, Lana then threw up on a nurse in the doctor’s office and they were able to see the severity of the situation. The doctor asked another doctor to come in to examine Lana. The second doctor had a suspicion that something very serious was going on. After looking at Lana, this doctor let Tonya know that she thought there was a tumor in Lana’s stomach. They called the hospital to let them know to expect Tonya and Lana and were sent to be admitted.
The hospital immediately admitted Tonya and Lana and started to perform a multitude of examinations and tests. They told Tonya that there was no tumor in Lana’s stomach, and the GI specialist again said he felt it was just acid reflux. Another doctor told Tonya that he was going to get her an official diagnosis and figure out what was going on. After more tests, including a genetics test, a diagnosis was given as Neurofibromatosis type 1.
Neurofibromatosis type 1 is a genetic condition characterized primarily by changes in skin color and the growth of benign tumors along the nerves of the skin, brain, and other parts of the body. Severity of the condition and specific features that each patient has varies from person to person.
Once Lana and Tonya left the hospital, they got a call and found out that they had discovered Lana’s first tumor. They had found it due to the MRI they completed when trying to figure out the cause of her acid reflux. The tumor was behind her eye and they wanted to keep watch on it for three months to see if it grew. Three months later, they completed another scan and found a much larger second tumor. At nine months old, Lana had yet another scan and they found that the second tumor was continuing to grow so they began chemotherapy. The tumor still continued to grow, and soon a third tumor was found.
Once realizing that the chemotherapy was not stopping the rapid growth of the second tumor they decided to go to Memphis, TN where they could meet with a pediatric radiologist and have another scan completed. This scan showed that the second tumor had already grown six millimeters and was pushing on Lana’s pituitary glands and is currently a hair away from pushing up against her hypothalamus.
The doctor recommended that Lana begin a trial drug available in St. Louis, MO. The trial did not come without harsh side affects. Tonya shares, “That was the hardest decision to make. Here’s this two page list of possible side affects that can happen with your child… they said ‘we don’t know if it’s going to work, but this is your last option so it’s up to you’.”
Lana is currently enrolled in the trial and Tonya has signed papers to commit to it for a year with scans every three months to monitor the tumor growth.
Tonya is a pillar of strength as she continues on this journey. While she is transporting Lana to all of her appointments and being her sole caretaker, she is also in school and doing all she can to provide everything and more for Lana. The prognosis for Lana is unknown at this point and Tonya continues to carry on and fight for her every second of the day.
Time to get loud shouters!
Throughout the month of July we will be shouting love for Lana and her mom, Tonya. It is a great honor to be able to tell Lana’s story and we hope you will join us in getting to know them.
So click here to shop now where every purchase will help cover the costs of frequent 8-hour road trips to St. Louis and back for Lana’s treatments. You can also start a monthly subscription and shout love for great families each month!
Let’s rally together and join them in this fight. Join us in shouting loud for Lana!