A smart, sweet 15 yr old girl with a beautiful soul. Alexis loves school and listening to music but her passion is dance. Alexis discovered her passion for dance at the age of 2. Alexis started taking dance classes when she was 4. She was always dancing making videos or musically's. She loved dancing on stage, she was always performing for friends and family any chance she could. She would dance at party's, talent shows, grocery stores basically any place she could all the time. She loved making new dance moves. She had big plans and all she talked about was her grades at school and going into performing arts to be a famous choreographer.
This is her story
After many years of dance she was ready to take the next step. She wanted to join a competitive dance team. At the age of 11 she tried out for a competition dance team. Alexis had to wait over the weekend to see the results. Those were the longest days ever. She was so excited and scared to find out. She was in, an official member of a dance competition team.
The day she was accepted into the dance team.
It's the beginning of her 7th grade year and she is taking advance placement classes. She started doing physical education class, the typical exercises of crunches, planks, sit-ups and running a mile. It was also the beginning of her dance team practices. Dance practice was 2-3 hrs a day which consisted of more crunches, planks, sit-ups, tumbling, break dance, running and dance. Alexis was exhausted but couldn't be any happier.
Just when life is great and she is happy and content she starts feeling sore everywhere and very weak. We assumed that it was from all the exercise she was enduring. She continues to get weaker and weaker not being able to stand, constantly fainting, sleeping most of the day only to get up to shower, school, homework, and dance practice. She had no energy what so ever, she'd fall asleep eating. It got so bad that she rarely ate at all. Alexis had no strength and couldnt stand at all without passing out. We take her to hospital and they admit her.
And if that wasnt enough she was getting bullied at school by someone who she thought was her friend.
It's December 2015, we get the devastating news, she was diagnosed with lupus. She was only 11 years old. Treatment was started and she was getting well. It was her birthday she was turning 12 and happy to return to school. she is greeted by a get well card but she soon discovered the bully wrote "I hope you die" "you suck at dancing" "go to hell". The emotional stress didn't help but she still managed to put a smile on her face.
By January 2016 she was back to normal and ready to join her team and compete. She was living the time of her life doing what she loves.
April came and she started to feel sick. Her lupus started to become aggressive. She started to retain lots of fluid and got very swollen. Her kidneys became affected by lupus. She is now also diagnosed with lupus nephritis. Than when things started to look up in June 2016 she woke up with excruciating pain with every breath she took.
After the second hospital in one day she got Medi Flighted to Lucille Packard Children's Hospital. She had multiple pulmonary embolisms.
New treatment more medication, higher doses and weekly infusions. We spent many nights at the hospital and alot of commuting.
With so many medication it started to affect her not only in a positive way but in a negative one as well. One morning in August, Alexis woke up with pain in both her ankles and overtime it never went away but instead progressed. After months of pain and x-rays, ct scans and mri's finaly we get results. August 2016 she was diagnosed with Bilateral Avascular necrosis in both of her ankles.
Avascular necrosis is an incurable disease that is due to lack of blood supply causing the death of bone tissue. So every time she walks she's in pain and her cartilage in her ankles is slowly deteriorating. Alexis hasn't been able to be active or even walk for long periods of time and sometimes not even at all. Even with all her struggles she still managed a 4.0 gpa all throughout middle school and graduated top of her class and now as a freshman she's in the Ib program.
Alexis' dr.'s consist of a rheumatologist, hematologists, cardiologists, neurologists, pulmonologists, nephrologists, and an orthopedic but it would be nice to see her going back to a choreographer. Its going on 2yrs since she's been able to dance but she never loses hope and always has a smile. Even when multiple doctors say theres no hope she stays optimistic for some good news and now she has finally got some.
After many hours of research I came across these braces called the exosym. It's a hybrid of an orthotic and prosthetic that off loads any impact when she steps allowing her to dance, run, jump but most importantly walk without pain. To say its life changing is an under statement. This device is giving Alexis her life back allowing her to live like a normal teenager. I have faith that this device will allow Alexis to walk with no pain and be able to enjoy family outings. The little things in life that are the most important without using the walker or mobility scooter. Unfortunately our insurance doesn't cover the Exosym device which cost $18,000 not including the expenses needed to travel to GiG Harbor, Washington. Which consist of two appointments. One is a 2 day stay for fitting and the next is a 5 day stay which she then goes through an extensive exercise program learning how to walk with these devices.
Please help Alexis be pain free. Any donation makes a difference a simple share on your social media can change her life. My family and I thank you in advance. If you have any questions please feel free to reach out.
- Art & Wendy Madrid
- Dominic Ornells
- JOHN HOLGUIN
- Joshua Watson
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